Surviving With The Guilt Of Living

In the wake of a tragedy such as the shooting at the Washington Navy Yard and other tragic events such as losing a loved one to a terminal illness, many of those who live wonder why they survived when others didn’t.

ImagePhoto credit: The Washington Post

“You’re happy that you’re alive, but then again, you’re sad because you know certain people died,” said Eric Hunter, a witness to the recent movie theater shooting Colorado. “You know children died. You wish…why not me instead of them? You just feel bad.” Jennifer Seeger, another witness, said, “I heard that a 6-year-old was shot. And I was just thinking the entire time, ‘How come I got so lucky?’ … I’m 22 years old. I’ve lived my life. You know, as far as that goes, I would love to take a bullet for that 6-year-old to live their life.”

When a person survives a traumatic incident in which others died, especially loved ones, it’s common to feel guilty for living. Survivor guilt can be an immediate response to a tragedy, and the extent of the feelings depends on the individual, according to Russell Jones, a psychologist at Virginia Tech who helped counsel victims at the school after a shooting rampage in 2007.

It’s important to understand what the survivor guilt means for the person, said Melissa Brymer, director of terrorism and disaster programs at the UCLA Neuropsychiatric Institute in Los Angeles. A lot of times, she said, it’s an expression of grief and loss. People may feel that someone else got hurt because of them. Maybe they could have been at the event but, by coincidence, didn’t go. Or it may be that someone did something heroic, perhaps even dying to save that person’s life, and “They’re appreciative of what happened, but they’re struggling with: They are alive, and their loved one isn’t,” Brymer said.

For some people, survivor guilt is just part of working through complex feelings after experiencing a traumatic event involving deaths and a way of mourning. But it may become all-consuming and impede functioning. Sitting back and taking time to process the event can help survivors cope. Seeking support from friends, family and community or faith leaders can help an individual work through difficult feelings.

But if there’s lingering guilt and anxiety, one should consider consulting a mental health professional. A survivor may experience symptoms of post-traumatic stress disorder and depression that requires formal treatment.

If they’re having changes within their behaviors or in their emotions or with their relationships with others, then we want to make sure that people get help.

Unfortunately, people who need help often don’t seek it. Very often, there’s stigma attached to getting help from a mental health professional. Therefore, they go without seeking treatment, oftentimes until they reach a breaking point.

About 8% to 15% of people who experience trauma develop severe PTSD symptoms that persist and require professional help. With support, people generally do well.

Classic symptoms include intrusive thoughts, flashbacks and nightmares. People may avoid anything that reminds them of the event and have difficulty paying attention. It may be paired with depression and suicidal feelings. These symptoms can lead to full-blown PTSD over time, especially if a person has a history of mental illness. Previous trauma, stress, loss of financial stability, and grieving the loss of family and friends are also risk factors.

There are several treatment strategies that have been shown to help people with survivor guilt and PTSD symptoms. Exposure is a central element of these strategies. Getting people to talk about the event and assimilating the event into everyday living are key. Therapists may also take the individual back to the setting where the tragedy occurred and allow the person to express his or her thoughts, feelings and emotions.

Therapists can teach clients relaxation and breathing skills to alleviate anxiety and to emphasize positive thoughts. In time, through social support and sometimes treatment, many of the troubling thoughts are fully alleviated.

If you know people who may be experiencing survivor’s guilt, check in with them frequently. How much is this consuming their lives? Are they able to attend to their basic needs? Are they so overwhelmed by their feelings that they’re stuck?

One coping strategy is to do something meaningful for someone else. Organizations that help people who have survived terminal illnesses, violence or natural disasters, or advocacy groups, may be good options for people who are trying to move on from a tragedy such as the Navy Yard shooting.Image

It can also be important for a survivor to honor those who died. If someone has died, is there something that you can do that’s meaningful and representative of that person? Is there something you can do so you’re unstuck, so you can do something powerful and meaningful to someone else?

Some people may also change expectations for their future as a result of surviving a traumatic incident. It’s important to make sure that life changes aren’t negative.

People need to know that this is very common, but there’s really nothing that they could have done. They are not responsible for the events and need to find comfort in that fact, honor their loves ones, and move on with their lives.

Source: Surviving with the guilt of living, by Elizabeth Landau, CNN, July 24, 2012

Advertisements
Categories: Uncategorized | Leave a comment

Stigma: breaking the vicious cycle – Repost from Anna Wagstaff

Stigma: breaking the vicious cycle

Stigma: breaking the vicious cycle

Stigma breeds silence, which fuels the fear and ignorance that feeds the stigma. Breaking this vicious circle not only makes life easier for people with cancer, but can also change public attitudes towards prevention and early detection.

» Anna Wagstaff

I learned that a person with cancer is a person and must be helped.” This statement is one among many similar recorded in an impact assessment of a two-year campaign to change public perceptions of cancer, spearheaded by the LiveStrong foundation. It testifies to the success of the campaign, but it also speaks volumes about prevalent attitudes that many people will find all too familiar: being diagnosed with cancer leads some people to see you as less than the person you were; they may avoid you, or feel ill at ease with you, or even behave in a hurtful or discriminatory way.

This is stigma. It deeply unfair to people who already have a difficult disease to cope with. But stigma also plays a toxic role at a wider social level, helping make cancer and cancer patients invisible, stifling informed public discussion and perpetuating a cycle of fear and misinformation that blocks attempts to raise awareness about avoidable cancer risks and the importance of early detection.

Many people argue that policies and programmes to tackle this stigma – and the misinformation that it feeds off and perpetuates – are essential if we are to turn back the rising toll of suffering and death from cancer. Claire Neal, part of a team that heads up the LiveStrong anti-stigma campaign, is one of them. “Challenging stigma is a key that opens a lot of doors across the entire cancer control continuum,” she says. “In our experience, if you can remove that barrier you can increase access to services and increase effectiveness of health promotion messages.”


“Challenging stigma is a key that opens a lot of doors across the entire cancer control continuum”


Why the stigma? 
A few years ago, the LiveStrong foundation spent a year interviewing more than 4500 healthcare providers, cancer survivors, organisational leaders and community members across 10 countries, to learn more about cancer stigma and how it operates (Cancer Stigma and Silence Around the World: A LiveStrong report). They concluded that it is pervasive, existing across countries, cultures, and communities, and is characterised by a set of feelings, attitudes and behaviours, that they have compiled into a universal “stigma index” that includes views such as:  Treatment and support are useless for someone with cancer  I would feel uncomfortable being friends with someone with cancer  People can only blame themselves for getting cancer  I would feel isolated/alone if I received treatment for cancer  If my spouse had cancer, I would consider leaving him/her. Neal believes there are a number of reasons why being diagnosed with cancer carries stigma in a way that, for instance, developing meningitis, measles or malaria doesn’t. Cancers can affect a person in so many ways – how they look, how they feel, their sexuality, their ability to have children, and often relationships with friends and family. “There are so many ways that cancer and its treatment can impact a person’s life, and there has been this silence around it,” she says.

Uncertainty about how and why it develops is another factor. “Cancer is less well understood, because it is so many different diseases. Often we don’t know exactly what causes it, and this can lead to different interpretations of what brings it on.” In many communities it can be seen as the result of witchcraft, or a judgement from God, says Neal. In others it can be attributed to stress, to having a negative mindset or to failing to take proper care of one’s mind and body. “Our research has shown that people often believe that people with cancer brought it on themselves, which again can be very stigmatising.”

Fears that the disease may be infectious can result in people being shunned by friends and neighbours and excluded from the community. Fears that it is hereditary can ruin the marriage chances of those with a mother or father known to have had cancer. Whole families can find themselves impacted, which can then put intolerable strains on relationships, leaving people with cancer even more isolated. Stories of men walking away from marriages when their wife gets cancer – or vice versa – seem to be common across the globe; the concept of “relationship-toxicity” is now circulating among parts of the advocacy community as one of the common side-effects of cancer.

A cancer control issue
Not surprisingly, such negative beliefs, attitudes and behaviours can make people reluctant to ‘admit’ that they have cancer, or even that they are worried they may have cancer. They may be deterred from seeking professional advice about worrying symptoms or from attending screening – particularly if they are ill-informed about the value of picking up and treating cancers at an early stage. Another result, says Neal, is that it becomes very hard to challenge the stigma and misinformation, which then creates a vicious circle. “Because people feel stigmatised they don’t want to talk about it. And in not talking about it, a lot of myths and misconceptions are increased and allowed to perpetuate.”


Such negative beliefs, attitudes and behaviours can make people reluctant to ‘admit’ that they have cancer


Breaking that vicious circle by challenging myths about cancer was adopted by the International Union for Cancer Control (UICC) as its campaigning focus for this year’s World Cancer Day. It was an interesting exercise, says Caroline Perréard, who played a key coordinating role, because myths are shaped by specific realities and cultures, and the campaign had to be relevant for all 760 member organisations in 155 countries.
UICC chose to focus on four myths:

  • Cancer is a death sentence
  • It is a matter of fate – nothing can be done about it
  • It is a disease of the wealthy, elderly and developed countries
  • It is only a health issue.

And they asked member organisations to identify the myths most relevant to them and to adapt the messages to their own needs.

It wasn’t clear how effective this approach would be, not least because the countries most in need of promoting conversations about cancer myths would be those where the taboos and silence are strongest. “Working with different regions is very challenging, because there are different messages that we need to get across,” says Perréard. “It’s a learning curve. We want to aim messages to all regions of the world. But messages need to get to countries like Japan and Korea, for instance, where stigma is such a big issue that it is very hard to communicate about prevention or myths. People don’t have access to the information.”

Perréard was surprised by the feedback from member organisations. “They were really thrilled,” she says. “They were so pleased to have a single theme they could all unite behind.” Groups with a long track record of advocacy on stigma and myth-busting used World Cancer Day to stage rallies and capture the media spotlight. Groups that rarely venture into this territory took the opportunity to open conversations about the prevalence and nature of misconceptions about cancer in their communities, getting medical students to do interviews with one another and/or members of the public, which were then shared on YouTube or other social networks and used in press conferences. The authority given by this international focus helped create the conditions for survivors to break the silence and tell their stories, to show that cancer does not have to be a death sentence, that early diagnosis is important, and that even when it can’t be cured, with treatment, care and support you can still have a good life.

An interactive map of events on the UICC’s worldcancerday.org website gives an idea of the range of actions carried out around the globe. Click on Jeddah (west coast of Saudi Arabia), for instance, for an impressive example of how the UICC’s global message was adapted to a local audience (“Myths and misconceptions about breast cancer”, Wardi video).

More similar than different

Looking at the issues highlighted across the globe, it is the similarities that really stand out. People in developed countries may be less likely to blame witches, or even God, for their cancer, but they nonetheless show a strong tendency to distrust conventional medicine and turn to unproven and often irrational therapies when cancer strikes. And while progress in early diagnosis and treatment has reduced fear and stigma associated with breast and cervical cancer in countries with more developed health systems, the same cannot be said of lung cancer, which remains hard to detect in time even in richer countries, and still carries that burden of fear.


Looking at the issues highlighted across the globe, it is the similarities that really stand out 


The vicious circle also seems to operate in a very similar way across the globe. A systematic review of the impact of stigma and nihilism on lung cancer outcomes, published in BMC Cancer in May last year, offers a pertinent example. It showed that perceptions that a diagnosis of lung cancer will inevitably result in death, and that cancer cannot be effectively treated, lead to delays in taking symptoms to the doctor or to refusing recommended treatments and investigations. Lung cancer carries a particular stigma due to its association with smoking, and the study found that this too could lead patients to delay reporting symptoms, because they believed that “treatment for lung cancer would likely be denied to smokers,” or that they would be “blamed for their disease”, even if they didn’t smoke.

The study also found that patients’ sense of being stigmatised acted as a deterrent to attending support groups – effectively leaving them silenced and invisible, and making it harder to challenge prevailing prejudice and convey potentially life-saving messages – the vicious circle at work again.

A joined-up approach 
Further complicating this picture is the potential of anti-tobacco campaigns to reinforce this stigma, and thereby contribute to delayed diagnosis and added suffering for patients. A survey of attitudes towards lung cancer patients, conducted for the Global Lung Cancer Coalition in 16 industrialised countries across five continents (Ipsos MORI 2011), showed the most negative attitudes were recorded in Australia – a country that has led the world in its efforts to tackle smoking – with 29% of respondents expressing agreement with the statement “I have less sympathy for people with lung cancer than people with other types of cancer.” This compares with only 14% in Spain and 10% in Argentina (where the least negative attitudes were expressed). Evidence cited by the BMC Cancerstudy, meanwhile, indicates that some people with lung cancer see information campaigns on tobacco as “contributing to fatalistic views, as they focused on death rather than treatment” and that they feel the press reinforces the smoking-related stigma.

This potentially counteractive relationship between prevention and early detection messages may also work in the reverse direction: efforts to reduce the fear and stigma that can deter people from seeing their doctor need to take onboard the potential impact on prevention efforts. This seems to be the message coming out of a comparative study of perceptions of cancer in France and Morocco that was commissioned by the French Ligue contre le cancer and published to coincide with this year’s World Cancer Day. The study showed that while French and Moroccans both associate “illness” and “death” with the word “cancer”, the French respondents were far more likely to mention treatment, for instance “chemotherapy”, while the Moroccans were more likely to talk in terms of a “danger”, or a “red zone that must be avoided”. However, the more positive French perception of the disease was accompanied by a far less accurate perception of lifestyle risks. More than 80% of Moroccans identified tobacco as the biggest cause of cancer, compared with less than 70% among French respondents, and while Moroccans put alcohol as the second most important avoidable risk factor (45%), French respondents put alcohol into fifth place at 31%, rating it as less important than pollution (38% vs 29% of Moroccans) and genetic factors (37% vs 23% among Moroccans).

Taken together, these findings indicate the need for a joined-up approach to cancer control where different aspects reinforce rather than undermine each other.

Breaking the vicious circle 
Fighting stigma and fear is not traditionally a key component of national cancer control policies, but evidence of the impact where it has been done well suggests that perhaps it should be. The LiveStrong foundation recently completed two pilot anti-stigma campaigns – one in South Africa and one in Mexico – which hinged on giving cancer survivors a platform to tell their own stories. They seem to have achieved their objectives in the short term at least.

The impact assessment of the Mexican campaign showed that three out of four people exposed to the campaign learned something new about cancer; almost an equal proportion said they now talked more openly about cancer; and more than two in five said they did something different – in terms of protecting their own health and/or being more supportive to people with cancer – because of what they had learned.

Fernando Rodriguez helped organise the Mexican campaign. “At the beginning of the campaign, we had information from many different countries about why people don’t receive the proper treatment on time,” he says. “The problem is they never go for check-ups because they are afraid of learning they have cancer. Part of our objective was to try to change people’s opinions. Instead of using awful numbers about all the people dying of lung cancer or prostate cancer or breast cancer, we tried to use the stories of all the survivors, from different social, economic and cultural backgrounds, and with different kinds of cancer. The idea was that, if they got together to speak out, they could help reduce the fear, break the silence and give different information through different approaches.”


“The idea was that, if they got together to speak out, they could help reduce the fear and break the silence”


One thing they learned from survivors early in the campaign is that the fear and misperceptions are not only deterrents to early diagnosis, but also result in patients failing to complete their full course of treatment, “because they feel awful and feel it is part of dying a little bit.” So the campaign tried to address this, says Rodriguez, by promoting the concept of ‘the new normal’. “You will have critical changes maybe, but after the treatment you can have a new normal life. A lot of people say you have cancer, you are superhuman. No, I am not superhuman. I am different because now I can appreciate the simple things of life. But you don’t have to go down this path to learn to enjoy your life like me. That is part of the message from cancer survivors.”

Focusing on four major cities in Mexico, they used radio, television, newspapers and, crucially, social networking. Two- to three-minute videos in which survivors from all ages and backgrounds gave their stories were uploaded onto the “Share your Stories” Facebook page. The site soon became a forum where survivors were able to interact with one another and upload their own videos. By the end of the campaign, the page was getting almost 900,000 visits per month.

In a stroke of genius, the campaign co-opted the support of Mexico’s popular wrestling stars. They staged well-publicised events that started with the traditional good-guy-versus-bad-guy format. Two masked interlopers representing cancer would then enter the ring, and the good guy and the bad guy would team up to defeat them, with the whole crowd behind them. “The whole point was about the stigma,” says Rodriguez. “The good guy and the bad guy were on the same team. Whether you are good or bad you are both wrestling the cancer.”

Government support for the campaign, as an effective way to raise awareness about cancer and convince people to use the screening and treatment services available, was crucial. “People don’t want to go because they are fearful and superstitious. We served as a link between those services and the public,” says Rodriguez. Mobile screening clinics attended the public events, and people were also able to pick up tickets to attend clinics for check-ups. Where the results showed further investigations were needed, says Rodriguez, they were referred on to the relevant clinics or institutes.

The government also cooperated in an initiative to help health workers communicate better with patients and the wider public about cancers. This involved community health workers and hospital staff – nurses, admin workers, even oncologists. Now that the pilot is over, government and campaigners are keen to find ways to carry on work that they feel has proved so effective, says Rodriguez.

“We weren’t sure if it would work, particularly as these were short-term campaigns,” says LiveStrong’s Claire Neal. “But we’ve been really encouraged to see that, yes, in a short amount of time, by elevating the voice of survivors, we were able not only to affect people’s perceptions of cancer, but actually change what they did. More people were going to get screening, they were talking more openly about cancer, they were changing what they were doing as a result of these campaigns. We had hoped we would see perceptions shifting, but I think we found much more than that.”

Most encouraging of all, says Neal, is the enthusiasm among participants to keep the campaigns going after the end of the formal pilot. “In both South Africa and Mexico local partners have said that they want to continue the activities of the campaign, and that they had reached populations they had never reached before.”

In Mexico, Rodriguez is busy with a follow-up campaign based on photographs, called “Before cancer, After cancer”, to carry the message that “the cancer could be another chapter in your life.” He is also talking to the government about continuing support for the communication workshops, and maybe other parts of the campaign. “They want to encourage survivors to continue these activities, to speak out and share their stories of cancer. And at national level they are very interested in workshops for healthcare providers,” he says.

LiveStrong is hoping the “stigma index” and the toolkit that they have developed will be used by groups across the world. “We see an incredible opportunity in this kind of work. If you can change how people view cancer you can really have an impact,” says Neal. “What I think we’ve seen in the mental health community and HIV/AIDS and other areas where stigma is an issue is that often we focus solely or largely on access, but it has to be done at the same time as addressing stigma, because if there is this great stigma, people aren’t actually accessing what’s there. So the two have to go hand in hand.”


“Often we focus solely or largely on access, but it has to be done at the same time as addressing stigma”


The UICC also is keen to find ways to continue this work. The 16 member organisations that are on the Advisory Group that plans and organises World Cancer Day have agreed to stick to the same theme for 2014, focusing on new myths to dispel. Caroline Perréard is looking forward to it, saying the enthusiasm among the UICC members makes it the most exciting campaign she has worked on.

COMMENTS (4)
 

Daniel Sencier says: 26 July 2013 12:04:05
So, so true, and most people who once talked to you will now cross the road. They don’t know what to say because cancer just means death to them! I wish it was different but I don’t think there is a way of changing this. I would love to be involved in any process that could bring about change. More support from my friends would have helped me for sure.
 

Dr Kirushnakumar says: 26 July 2013 12:47:57
Stigma is a very big problem in India for various reason’s like they are treated as an untouchable – they are kept away from the family, so, that they don’t even want them to know. In the bargain some people don’t even take treatment as there are chances that their relatives might come to know. The other major fear is the word itself which brings them the fear of death and end treating at a very late stage though they would have diagnosed at an early stage. I will be very happy to clear the stigma in which ever way I could.
 

Lisa Quintana says: 26 July 2013 18:19:43
Stigma is a big problem in the US. I have had people remove themselves from me because “I was just going to die anyway.” I have had people tell me that “It must have been something you did.” (Yeah. right. clean living was me and I was ony 34 when diagnosed). I’ve had people tell me God was punishing me. (Please tell him to let me know what I did…..). I have friends who had to have colostomies and even others with cancer take several steps away from her or look at her with distaste. I have had people tell me that I shouldn’t have any more than 5 different chemos as insurance shouldn’t have to pay for it because it was too expensive (so my life is worth less just because I was born into and have remained middle class?????). When people see me without my wig….they look away (interestingly, children don’t and treat me normally). I know women who don’t get checked out because they are afraid of the outcome….or don’t take chemo because they are afraid (it isn’t like it used to be when I started in 1994). I know women who are afraid of losing their breasts and hair and figure they are just going to die from it if they have it, so they don’t go for diagnosis and treatments….and this is the U.S.A. I’ve been living with a stage IV diagnosis since 1998….although I am still in treatment and have been for the last three years, I am still alive and kicking….and trying hard to work to let people know that although the path is hard, it is doable….and I’m still here through my blog and I also speak publicly about this. One person at a time, but it needs all of us to reach out and do this.
Categories: Uncategorized | Tags: | Leave a comment

Be A Patient Patient

Translated letter from Maria Del Carmen Matos – My Sister and Proud Cancer Survivor. Original text in Spanish at http://sepaciente.blogspot.com/

Greetings!

Being patient, no matter under what conditions, is very important. Not only for what you will receive from others, but because your own recovery will depend on it. Some say it is easier said than done, but I experienced it and I’m living it in the flesh. I’ll tell you a little story, for those who do not know me.

Since 2001 I knew I had the possibility of having breast cancer. However, I put other things in top priority and it was not until 2005, when I felt a lump in my right breast, when I began to worry. Still, I put other things in higher priority and until the summer of 2006, when I began to undergo studies I realized the painful process of facing the steps involved to remove a breast cancer.

The word cancer gives you goose bumps, but thanks to God and scientific advances today, cancer is pretty much a condition like any other serious condition, one has to submit oneself to treatment and follow to the letter the instructions from your doctors. However, you must keep looking for current information about your condition, because there are many personal and individualized protocols and processes. Your personal treatment is established through the tumor pathology, that information will not be given to you until a few weeks after the tumor is removed or a biopsy is taken. Let’s take it in parts.

In the process I learned to be patient (I’ve always been in high revolt and willing to help others, now I had to reserve my energy for recovery); I learned to ask (if you do not speak, people can not help you as they will not read your mind); I learned to give thanks (something we very often forget); I learned to be grateful (no matter what you already have, it is a blessing because you’ve got it, you do not have to ask or search for it); I learned to share with others the knowledge I gained in the process (this is what lead me to write this letter); I learned to forgive, to tolerate, to endure, to be much more positive, to mourn or cry (whenever necessary) because it is not healthy to keep inside any feelings, and that does not help you improve your condition; I learned to say NO (you can’t always say yes to please others and compromise yourself, because your life depends on it. Despite appearances and what others could think, your are not being selfish for thinking of you at this time, we only need to know how to say a polite NO, and not offend those who are trying to give us a hand).

I underwent a partial mastectomy or lumpectomy, on December 6, 2006. In January 2007 I got a Med-Port for treatment, which began in February of that year. My first treatment step were 8  chemo’s of Adriamycin. My second stage were 35 radiation therapy sessions, then returned to chemo with Taxol for 12 treatments,  and  starting in early February 2008 received Herceptin every Tuesday for 52 weeks.  Then continued with 5-6 years of Tamoxifen, a drug taken by mouth (thank God). This drug was then replaced with Adriamycin in March 2010. You may think, God, that is a heck of a process! And it is so, but if you take it one day at a time and do not focus on what still has to be done to be over, you realize what you’ve overcome. The first year since your diagnosis, it’s hard and tiring because you have to be constantly on doctors’ visits and tests. You might feel like your head is huge and perhaps explode with so much information and data you receive on each visit, but it is necessary.

You need to take control of the decisions made regarding your health and treatment, read, search the Internet, and do not stay with what doctors tell you. If you educate yourself you cannot ask what interests you, write down all your questions so that you can remember them when you see your doctor. These treatments are protocols that depend on the pathology of your tumor, but there are things that do not apply to your particular case and that you will not know if you do not read and educate yourself. It is important to take note of the drugs that are given to you. You should be aware of their administration (remember that we are human and can make mistakes), carry an organized file of your medical examinations, laboratory tests, invoices and/or receipts, requests copies of all documents that record your condition and request a copy of the pathology of the tumor. This is important because it will keep a complete record of your condition if you have to change doctors, and many doctors are going to be working with you at the same time and everyone needs that data to give you the best help available at the time.

Do not rely on the medical system. Take charge of the process.  It may also be  possible  that you can  be  included in a study (or protocol) of a new medicine that applies to your condition and you do not have to pay for it. Be ready to provide all the information that you have at any time. You might see a new doctor with incomplete information.

Almost all health plans cover most of the treatment costs as cancer is treated as  a catastrophic condition, yet, if your health plan does not cover most of the expenses, there are institutions that can help. Fear not about knocking on doors. All you need is a copy of your diagnosis and unpaid bills, they do not ask anything more.

On a personal level, rest, eat well, meditate, pray, take plenty of fluids. Take a notebook and write down how you feel each day, whether a single word or a full page, it helps getting rid of negative feelings and emotional burdens that do not help you improve. Listen to good music or as much as you like, read fun stuff, see funny movies, go to the movies or the theater (you might have to cover yourself with a mask to avoid infections. If there are too many people, sit in the back row or go to a place where there isn’t much public to avoid becoming infected with a cold or other illness. Anything you get could create complications).

Use gloves in the kitchen, patio or when cleaning, to prevent cuts and/or infections. If you have lymph nodes taken out (underarm, armpit), you should use compression arm sleeve and hand gloves to prevent stroke when traveling. Remember that your arms no longer have the same movement and blood flow as before.

This condition changes your life and that of your family, but everything is completely manageable. Do not get bogged down, take it easy, remember you’re not the first person who goes through it, nor will you be the last. Learn all you can, so you can help others, you will be amazed at the amount of people you know who have been there or are going to approach you because they are beginning to  face the process. Unfortunately, the incidence of cancer has increased alarmingly and more and more young people are affected.

I hope I have been helpful, you know that everything is possible if you put all your will, faith and optimism into it. Remember, every situation we face in life is to give us a great opportunity to learn something that will be useful for us and for those around us. Do not miss the opportunity to learn because God does not give anyone a load one cannot carry. Be brave, take control of your life, accept and execute whatever you have to do for your own good. Usually, we can’t understand at first why things are the way they are. Do not look for a five-legged cat because you might never find it. Take time. There is nothing better than time to heal wounds and clear your mind. When you do not feel 100% of positivism, and face just a 50%, cry, scream, punch the pillow with your fists and then come afloat again. Try not to stay long in the 50%, and get out of the funk, because it will not help you in your recovery to stay there. Above all, remember that everything in life has an end. Nothing lasts forever. Nothing. So, dream with reaching the end of the process, with faith, and full of love and hope.

In 2010, I was hospitalized and had to repeatedly visit the ER because of the effects of drugs had affected my internal organs. THANK GOD, thanks to my wonderful family, my doctors and my friends, because alone it is more difficult to deal with this wonderful healing process. Even today (2012) I continue to struggle with the side effects of medications and an ocean of medications that, even if I wanted to, I cannot abandon. I take care of myself and yet once in a while I have to face scares, hospitalizations, biopsies and situations where even my doctors (which are many) do not get to determine what is going on with me. I’m used to be an experiment, to be rare, to be a machine and an instrument for medical studies or laboratories.

Those that do now know me might think I am just peachy, but only those closer to me and those with whom I have shared my condition remember that once you or loved ones are diagnosed with cancer, cancer will remain in your life forever. You get involved and your life changes. That is why it is preferable to see it as a condition and not a disease.

Categories: Uncategorized | Leave a comment

The Positive Angle of “Survivor Guilt”

The positive side of survivor’s guilt is that it can serve as motivating force for change. Many end up making a donation, volunteering, or joining one or more campaigns to address cancer research and assistance for cancer survivors, including affected caregivers and family members. The psychological toll that cancer treatment takes on patients and those around them is very significant. Depending how one reacts to the consequences of survivorship, however, people might find themselves overextended and overcommitted. This in turn could cause undue stress due to the inability to meet the self-imposed tasks and responsibilities.

helping20hand

I’ve been there

On the other hand, the drive, devotion, and true dedication to making a difference provide a sense of fulfillment to the individual, and many benefits to the organizations or persons with which the survivors work. Having “being there” gives the survivor a sense of identification with those patients, caregivers, and family members “going through it” right now. Here is a little story:

“This guy is walking down the street when he falls in a hole. The walls are so steep he can’t get out.”A doctor passes by and the guy shouts up, ‘Hey you! Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on.”Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on”Then a friend walks by, ‘Hey, Joe, it’s me can you help me out?’ And the friend jumps in the hole. Our guy says, ‘Are you stupid? Now we’re both down here.’ The friend says, ‘Yeah, but I’ve been down here before and I know the way out.'”

Sometimes it takes one who has been there to help those in need, who are in similar circumstances. Survivor guilt can be a medium and motivator to satisfy feelings of personal responsibility.

A Sense of Responsibility

Individuals with a sense of responsibility for those around them may be particularly vulnerable to guilt feelings. Among this group are individuals in positions of authority (e.g., administrators, supervisors), positions charged with rescuing or maintaining the well-being of others (e.g., police, firepersons), or who habitually feel responsible for others (parents, siblings, children of ill parents, spouses, close friends). For some, responsibility for others is defined as part of the job or part of who they are. People often readily relinquish responsibility to these individuals adding to the sense that it is their charge not only to keep things right but to make things right. As a result, members of this group may feel a sense of failure and guilt even when rescue or well-being are impossible.

Julie, a bank manager, was in her office when a novice and frightened bank robber accidently shot a bank customer and ran out of the bank. Hearing the shot, Julie had her secretary call for help, and she ran out to find the wounded woman bleeding from nose and mouth. Her staff breathed a sigh of relief that she was there. They readily relinquished responsibility to Julie and went with bank patrons to a quiet, safe location in the bank. The wounded woman died before reaching the hospital. Julie’s post-traumatic stress reaction was severe. She entered therapy, and her preoccupation with what she should have done dominated her early treatment experience. Her refrain became, “If only…” (e.g., she had been in the banking area instead of doing paperwork, she could have calmed the young man or talked him out of what he was doing, or even taken the gun away). Rumination about how she could have taken charge of the situation kept her focused on the time before the robber fired his gun.

Relief?

After a traumatic event, some joyful thoughts or relief about surviving are normal and reasonable for those who were not directly affected: “Thank God it wasn’t me!” “Thank God it isn’t happening here.” For some of those directly exposed to life threatening events, at least temporarily, there may be elation over having survived. For those affected by the event, traumatic symptoms may appear initially or after the elation subsides. For example, Edgardo had to keep moving, as quickly as possible, down the Pentagon hallways in order to survive after the fire erupted in his office as consequence of the plane that struck the building on September 11, 2001. Initially, thinking there was no danger after a few minutes, some well-meaning individuals (including supervisor) sent people back to their offices. Edgardo followed a “gut feeling” and kept going. A large group of other people rushed out along side of him. At one point, a number of people were killed behind him when fire came blazing out of an elevator shaft. Edgardo barely escaped injury and kept rushing down the endless hallways. After assisting some of the injured and for the first few hours after making it home, Edgardo was elated to be alive. It was after watching the news coverage that night of the events at the Pentagon and New York that he realized what he had just experienced. Nightmares, repeated mental images and sounds of the horrors he had witnessed and other symptoms began to undermine his life.

After someone dies and after traumatic events, “survivor guilt” may occur because

  • individuals feel guilty for surviving or being uninjured when others were killed or injured
  • they were unable to rescue someone or had to leave someone dying in the disaster; or
  • it was not possible to overcome the events

Survivors who went through the event may feel guilt because of lack of understanding of why bad things happen to people who do not deserve them, or because of feelings of helplessness or lack of action (“I did not do enough”).

Doing more

Some survivors continue with rescue work or other efforts and regain a more balanced perspective about what is possible and what is not. Finding a positive approach and positive gains has been of help to some. Long ago, Lucia was given a plaque of a beautiful scene with the words, “Bloom where you’re planted.” written on it. At first, she did not like the plaque. Later, she realized that it did not mean she had to stay in her current circumstances but meant that she could create something good from every circumstance in which she found herself. Discovering new resources, new strengths, and new methods of dealing with difficult problems and reaffirming relationships or making new ones has benefitted many survivors. Some survivors have benefitted from attending support groups. Others have built meaningful memorials or found ways of sharing the process of honoring the dead.

In fact, survival is an achievement. It is a tragedy that so many have been killed in violent events or as result of terminal diseases. It is a blessing to all of us that no more are killed. Although choices may be limited during a traumatic event, the survivor does have choices after the event. They can remain locked in numbness or distress or can use survival as a source of insight and growth. Guilt can be adaptive when it leads to improvements in character and behavior. Unprocessed guilt can make recovery difficult. Therapeutic assistance is important for persistent and/or intense guilt as well as other trauma symptoms that disrupt life.


A Method for Processing Survivor’s Guilt


  • Thank goodness, you survived!
    • More people than you know are happy that you survived
    • We are saddened by so many deaths
    • Even if the rest of your life seems insignificant to you, we are relieved that you are alive
  • Know that there is no offense in surviving
    • It is good to survive
    • It is okay to delight in being alive
  • Feel free to reassess your life
    • Reassess what is valuable to you
    • Make the best of your life
      • Making the best of your life can be a tribute to your survival and to those who died
      • Take the opportunity to reevaluate the meaning of your life
      • Is your life all it can be?
      • What is or can be your purpose?
      • Your talent?
      • Your benefit to life?
      •  Bloom where you’re planted
        • Process the traumatic experience and its associated symptoms with appropriate assistance
        • Put guilt to good use
      • Maintain a healthy realization of you can and can’t do
        • Do not overextend yourself by overcompensating trying to do too much beyond your capabilities or resources
        • We can do just enough and still bloom where our seeds are planted
  • If it is in your nature to do so, CHERISH LIFE
    • Treasure being alive
      • Whether you survived due to fate, a purpose, luck, chance, or “just did”, long life and kindness are not guaranteed to any of us
      • Each day and each act of kindness can be treasured as gifts
      • Treasure the best of each day
      • Treasure the lesson that the departed have given you
        • An opportunity to enlighten your own life
      • Be aware of your physical mortality in good and positive ways
      • Allow that cherishing life may be easier after recovery from trauma
  • Recognize the reawakening of old issues
    • Survival may have triggered old feelings of worthlessness or unworthiness
    • Surviving may have amplified old messages that you received about not being worthy, about being a nuisance, about not measuring up, and/or about not counting
  • If guilt persists or disrupts life, seek appropriate therapeutic assistance

 The Positive Side

Whether for acts committed or omitted or for a sense of culpability, guilt can have a significant effect on the spiritual, mental, emotional and physical well-being of the guilty and others affected by the guilty party’s behaviors and attitudes. It can influence demeanor, actions and circumstances. Failure to resolve guilt can result in a multitude of problems including mental health difficulties (e.g., depression), negative responses from others, disrupted relationships, a more pronounced traumatic reaction, and/or immobilization. Staying focused on guilt rather than acting positively and toward resolution can be a way of avoiding facing other issues and emotions. Without resolution, it can hinder and/or complicate traumatic response and recovery as well as the nature of relationships. Guilt can punish more than the guilty.

With the help of a skilled intervener, the level of culpability and the appropriate actions to take can be thoroughly assessed. Guilt can serve as a mobilizer – a call for action. It can move us to reexamine ourselves and our actions and to act in a carefully considered positive manner that benefits the survivor and others who are affected by the event and/or the survivor’s actions.


Acknowledgements references and more information at:

http://www.giftfromwithin.org/html/Guilt-Following-Traumatic-Events.html

Categories: Uncategorized | Tags: | Leave a comment

Cancer Survivor’s Guilt and Its Ugly Cousin

This a post from someone who battled about disclosing her dealing with the prospect of cancer and how she dealt with her guilt after finding out that she was going to be okay.

Freedom

Someone finally said it out loud. I’ve been thinking it since my diagnosis and, finally, someone actually said it. She was an older woman, who was obviously upset and angry about her battle with ovarian cancer. We came together while I was manning a table in the lobby of the cancer center with Sarah Mandel. We were there to talk about breast and ovarian cancer awareness.

She walked up to the table, perused the offerings and thumped an ovarian cancer handout, stating, “That’s me.” We sympathized and talked with her about her journey. At one point, however, she said, “I have stage 3; my friend has stage 1 – which is like having a pimple.”  I turned my face away from her, I couldn’t look at her straight on anymore, but I said nothing. I felt her pain and anger at her disease, but what she said caused me pain too.

I am sure she never would have expressed that opinion directly to her friend. But what she didn’t consider was that there was someone sitting right in front of her who was diagnosed with Stage 0 and I did hear what she said. With that one pronouncement, she made it very clear to me what she thought of my cancer experience. And, my experience didn’t even rise to the level of a “pimple.”

Now I can’t say her opinion surprised me, because I’ve been plagued with such thoughts myself.  Without a tumor and with a Stage 0 cancer diagnosis, I started this journey not even sure I was qualified to call myself a cancer patient.   (And that was despite the fact that I heard those three words everyone else has heard, “You have cancer.”) I didn’t know what to call myself. I didn’t know where I fit in. I didn’t seek out help because I wasn’t sure I was entitled to it. I kept thinking I should just be glad I wasn’t given a death sentence and get over it.

Part of my confusion was from the use of the word “lucky” by my medical team. When I received the initial diagnosis from a physician’s assistant, she used the term profusely. She also told me I would probably need a lumpectomy and radiation. Later, when my doctor advised a mastectomy – removal of a body part and reconstruction – I had to ask – if this is so small and I’m so lucky, why do I have to go through the same operation as women who have “real” cancer?  I truly didn’t get it.

I know now that I was in fact lucky – I didn’t have to worry about death, I didn’t go through radiation, I didn’t suffer through chemotherapy, I didn’t lose my hair. But, did submitting to major surgery, which caused complications, a long period of disability, debilitating body image issues, major scars, emotional pain and suffering, and a second reconstructive surgery, only to be told that, oh by the way, you have LCIS too, which means your healthy breast is now at risk, was that nothing but a “pimple?”

Okay, I realize as I’m writing this that I’m defensively justifying myself.  The truth is that cancer is not a competition and, just as I am enough, so is my cancer.  I certainly did go through less than some one else might have gone through.  Thank God for that.  For that I should be grateful, not made to feel, by myself or anyone else, that I am guilty of not suffering enough to qualify in the cancer games.

Speaking of guilt, I know that by feeling bad about not suffering enough, I am experiencing “survivor’s guilt.” The question of why I am here and healthy, when others are not so fortunate, is painful to ponder. But I have to say, and this might not be popular: Survivor’s guilt has an ugly cousin. When I experience survivor’s guilt I am doing it to myself. When others inflict their judgment upon me that I have not suffered enough, that’s survivor’s one-upmanship.

I thought when I created WhereWeGoNow.com that the biggest sticking point for me would be revealing myself so publicly. It turns out I was wrong. The issue that has bothered me the most is whether I am qualified to talk about cancer when I didn’t go through chemotherapy, didn’t lose my hair, didn’t have radiation, and didn’t ever face the prospect of dying. As I sat there in silence, Sarah immediately responded to the woman’s comment with a gentle reminder that all cancer survivors go through a lot and everyone’s experience is significant and painful to them. I don’t think the woman heard a word she said, but I did and I was immediately grateful again for the advocacy of my wonderful breast nurse navigator. She helped set me straight and reminded me that most of the many, many cancer survivors I have met during this journey certainly don’t have this opinion.

It turns out my “problem” is also my good fortune. When I say it that way, I realize how wrong it is to let yourself, or anyone else, berate you for not suffering enough from cancer. I feel for that woman’s pain and I know she never meant to cause me any suffering. The point is that cancer has caused us all pain and its only remedy is banding together to support our mutual healing.

I can’t be the only one. Have you experienced cancer one-upmanship? How has it made you feel and how do you battle your cancer survivor’s guilt?

For original post and responses go to: Debbie’s Blog

Categories: Uncategorized | Leave a comment

Is Survivor’s Guilt Similar to Post-Traumatic Stress Disorder (PTSD)?

The National Cancer Institute at the National Institutes of Health have found that some survivors of cancer experience trauma-related symptoms similar to symptoms experienced by people who have survived highly stressful situations, such as military combat, natural disasters, violent personal attack (such as rape), or other life-threatening events. This group of symptoms is called post-traumatic stress disorder (PTSD) and includes avoiding situations related to the trauma, continuously thinking of the trauma, and being overexcited.

People with histories of cancer (survivors, family members, and caregivers) are considered to be at risk for PTSD. The physical and mental shock of having a life-threatening disease, of receiving treatment for cancer, and living with repeated threats to one’s body and life are traumatic experiences for many cancer patients. Likewise, close family members of cancer patients (parents, siblings, close friends, and others) and caregivers may identify with the illness and suffer from related traumatic symptoms.

Diagnosis and Symptoms

Post-traumatic stress disorder (PTSD) is defined as the development of certain symptoms following a mentally stressful event that involved actual death or the threat of death, serious injury, or a threat to oneself or others.

For the person who has experienced a diagnosis of cancer, the specific trauma that triggers PTSD is unclear. It may be the actual diagnosis of a life-threatening illness, aspects of the treatment process, test results, information given about recurrence, or some other aspect of the cancer experience. Learning that one’s child has cancer is traumatic for many parents. Because the cancer experience involves so many upsetting events, it is much more difficult to single out one event as a cause of stress than it is for other traumas, such as natural disasters or rape. The traumatic event may cause responses of extreme fear, helplessness, or horror and may trigger PTSD symptoms.

depression_by_thirsty5

PTSD in cancer survivors may be expressed in these specific behaviors:

– Reliving the cancer experience in nightmares or flashbacks and by continuously thinking about it.

– Avoiding places, events, and people connected to the cancer experience.

– Being continuously overexcited, fearful, irritable, and unable to sleep.

To be diagnosed as PTSD, these symptoms must last for at least one month and cause significant problems in the patient’s personal relationships, employment, or other important areas of daily life. Patients who have these symptoms for less than one month often develop PTSD later.

Risk Factors, Protective Factors, and the Development of PTSD

 As many as one third of people who experience an extremely upsetting event, including cancer, develop post-traumatic stress disorder (PTSD). The event alone does not explain why some people get PTSD and others don’t. Although there is no clear answer as to which cancer survivors are at increased risk of developing PTSD, certain mental, physical, or social factors may make some people more likely to experience it.

Individual and social factors

Individual and social factors that have been associated with a higher incidence of PTSD include younger age, fewer years of formal education, and lower income.

Disease-related factors

Certain disease-related factors are associated with PTSD:

– In patients who received a bone marrow transplant, PTSD occurs more often when there is advanced disease and a longer hospital stay.

– In adult survivors of bone cancer and Hodgkin lymphoma, people for whom more time has passed since diagnosis and treatment tended to show fewer symptoms.

– In survivors of childhood cancer, symptoms of PTSD occur more often when there was a longer treatment time.

– Interfering thoughts occur more often in patients who experienced pain and other physical symptoms.

– Cancer that has returned has been shown to increase stress symptoms in patients.

Mental factors

Mental factors may affect the development of PTSD in some patients:

– Previous trauma.

– Previous psychological problems.

– High level of general stress.

– Genetic factors and biological factors (such as a hormone disorder) that affect memory and learning.

– The amount of social support available.

– Threat to life and body.

– Having PTSD before being diagnosed with cancer.

– The use of avoidance to cope with stress.

Protective factors

Certain factors may decrease a person’s chance of developing PTSD. These include increased social support, accurate information about the stage of the cancer, and a satisfactory relationship with the medical staff.

How PTSD may develop

PTSD symptoms develop by both conditioning and learning. Conditioning explains the fear responses caused by certain triggers that were first associated with the upsetting event. Neutral triggers (such as smells, sounds, and sights) that occurred at the same time as upsetting triggers (such as chemotherapy or painful treatments) later cause anxiety, stress, and fear even when they occur alone, after the trauma has ended. Once established, PTSD symptoms are continued through learning. The patient learns that avoiding the triggers prevents unpleasant feelings and thoughts, so coping by avoidance continues.

Although conditioning and learning are part of the process, many factors may explain why one person develops PTSD and another does not.

Abstract Silhouette Praying

Assessment

It is important that cancer survivors and caregivers undergo a careful assessment for post-traumatic stress disorder (PTSD) so that early symptoms may be identified and treated. The timing of this assessment will vary with the individual patient. Cancer is an experience of repeated traumas and undetermined length. The patient may experience stress symptoms anytime from diagnosis through completion of treatment and cancer recurrence. In patients who have a history of victimization (such as Holocaust survivors) and who have PTSD or its symptoms from these experiences, symptoms can be started again by certain triggers experienced during their cancer treatment (for example, clinical procedures such as being inside MRI or CT scanners). While these patients may have problems adjusting to cancer and cancer treatment, their PTSD symptoms may vary, depending on other factors. The symptoms may become more or less prevalent during and after the cancer treatment.

Symptoms of PTSD usually begin within the first 3 months after the trauma, but sometimes they do not appear for months or even years afterwards. Therefore, cancer survivors and their families should be involved in long-term monitoring.

Some people who have experienced an upsetting event may show early symptoms without meeting the full diagnosis of PTSD. However, these early symptoms predict that PTSD may develop later. Early symptoms also indicate the need for repeated and long-term follow-up of cancer survivors and their families.

Diagnosing PTSD can be difficult since many of the symptoms are similar to other psychiatric problems.

For example, irritability, poor concentration, increased defensiveness, excessive fear, and disturbed sleep are symptoms of both PTSD and anxiety disorder. Other symptoms are common to PTSD, phobias, and panic disorder. Some symptoms, such as loss of interest, a sense of having no future, avoidance of other people, and sleep problems may indicate the patient has PTSD or depression. Even without PTSD or other problems, normal reactions to the cancer diagnosis and treatment of a life-threatening disease can include interfering thoughts, separating from people and the world, sleep problems, and over-excitability.

Questionnaires and interviews are used by health care providers to assess if the patient has symptoms of stress and to determine the diagnosis.

Other problems may also exist in addition to PTSD. These problems can include substance abuse, emotional problems, and other anxiety disorders, including major depression, alcohol dependence, drug dependence, social fears, and/or obsessive-compulsive disorder.

Treatment

 Effects of post-traumatic stress disorder (PTSD) are long-lasting and serious. It may affect the patient’s ability to have a normal lifestyle and may interfere with personal relationships, education, and employment. Because avoiding places and persons associated with cancer is part of PTSD, the syndrome may prevent the patient from seeking medical treatment. It is important that cancer survivors receive information about the possible psychological effects of their cancer experience and early treatment of symptoms of PTSD. Therapies used to treat PTSD are those used for other trauma victims. Treatment may involve more than one type of therapy.

The crisis intervention method tries to lessen the symptoms and return the patient to a normal level of functioning. The therapist focuses on solving problems, teaching coping skills, and providing a supportive setting for the patient.

Some patients are helped by methods that teach them to change their behaviors by changing their thinking patterns. Some of these methods include helping the patient understand symptoms, teaching coping and stress management skills (such as relaxation training), teaching the patient to reword upsetting thoughts, and helping the patient become less sensitive to upsetting triggers. Behavior therapy is used when the symptoms are avoidance of sexual activity and intimate situations.

Support groups may also help people who experience post-traumatic stress symptoms. In the group setting, patients can receive emotional support, meet others with similar experiences and symptoms, and learn coping and management skills.

For patients with severe symptoms, medications may be used. These include antidepressants, antianxiety medications, and when necessary, antipsychotic medications.

In my next post I plan to look at the “positive” side of having feelings of “Survivor Guilt”.

Here is a recent study on this topic: Survivor Guilt

Source:

http://www.cancer.gov/cancertopics/pdq/supportivecare/post-traumatic-stress

Categories: Uncategorized | Tags: , | Leave a comment

Interviews with Cancer Survivors Experiencing “Guilt”

 

livestrong

The following link will direct you to interviews with cancer survivors who have experienced or are experiencing “survivor guilt”. These testimonies can bring into perspective the different ways that this syndrome surfaces and what others have done about it.

http://www.livestrong.org/Search?SearchText=%22survivor%20guilt%22

Categories: Uncategorized | Tags: , | 1 Comment

Welcome to “Alive and Not Guilty”

hands

I started this blog to share my interest on the topic of “survivor guilt”, and provide information and resources to those who might be interested in the topic and how to deal with it. Please share your thoughts, experiences, and resources. I am just starting to wrap my hands around the topic and hope this information is of some help.

This is an area of personal interest that I have developed during my PhD studies in psychology that may be on interest to some of you. Many terminal illness survivors and caregivers may experience this in many different ways and it could be of benefit to be aware of its occurrence. I also survived the Sept 11, 2001 attack in the Pentagon, and most recently, the shootings at the Washington Navy Yard.  These prompted me to ask “why not me?” “why am I still here?” and ever since I have been living every day to make it count, to make a difference, and help others.

I have also seen how some great friends have been affected by this after losing loved ones or surviving a period of struggling with an uncertain future. They feel like they did not do enough and now are trying to compensate for it, or feel not worthy of making it though the challenge. That can be good and bad, as they may end up overextending themselves and their effort may backfire on them. I intend to conduct post-doctoral research on this and would like to include a competency at LIVESTRONG on how to help people that experience Survivor Guilt cope with it in a positive way.

Here are some thoughts on the topic I shared in the LIVESTRONG website last year:

Survivor Guilt: What Long-term Survivors Don’t Talk About

While survivor guilt is not experienced by everyone, and may vary a great deal in intensity, it appears to be a common experience. The following article answers some questions survivors may have after experiencing a tragedy.

What is survivor guilt?
Survivor guilt has been described in Holocaust survivors, war veterans, rescue workers, transplant recipients and relatives spared from hereditary illness. Relatively little discussion of survivor guilt has taken place among long-term survivors of acute and chronic illnesses.

Survivor guilt, when it occurs, derives from situations where persons have been involved in a life- threatening event and lived to tell about it. It is often experienced after traumatic incidents causing multiple deaths. In the special case of chronic illness, survivor guilt can occur after the deaths of peers who faced the same diagnosis. By definition, there is an implied comparison with people who have endured similar ordeals.

Who experiences survivor guilt?
Anyone who survives can experience these feelings including patients, families and healthcare providers. Survivor guilt explores the other side of the coin of why me? Namely, why not me? Why did I survive when others did not? Those who struggle with it may express the feeling of being an impostor: somehow the “wrong” person survived; it “just doesn’t seem right.” Many feel that beating the odds makes little sense unless the survivor earned or deserved it in some way. But some survivors emphasize they don’t feel especially deserving. To complicate feelings of unworthiness, in the early stages of grief there is a tendency to idealize the deceased, so the survivor may feel even less deserving by comparison.

Why does survivor guilt occur?
Survivor guilt may be reinforced by the frequent use of statistical profiles to predict as well as to describe illnesses. However, people given the very same odds for survival do not necessarily have similar outcomes. When only one survives, it is not unusual to conclude that two persons facing the same threat somehow changed places; that one person’s healing occurred at the expense of another; or that there is a debt owed to those who are gone. Some survivors may keep a low profile to avoid spotlighting this contrast of outcomes.

Does survivor guilt have a function or purpose?
Survivor guilt may exist for a reason. It can help people find meaning and make sense out of their experiences. It may help survivors cope with the helplessness and powerlessness of being in a life- threatening situation without the ability to protect or save others. It can also be one way to express a connection to those who have died, a way, for a time, of keeping them alive. Importantly, survivor guilt can co-exist with other responses, such as relief and gratitude, and may occasionally be prompted by them.

What can I do if I experience survivor guilt?
Acknowledge and accept that guilt exists. Feelings of guilt are quite common and represent part of the healing process for persons coping with loss.

When people feel guilty, they tend to isolate themselves. While tempted to keep silent, try to discuss the experience with persons who will not express judgment.

Logic may have little or no impact on guilt, but it is important to do some reality testing with your beliefs. Remind yourself that you are human.

When you find you are comparing yourself with others, try instead to evaluate your situation on its own merits.

Some people try to “work off” their guilt by setting high standards of achievement. This is a very compelling strategy, but it rarely eases feelings of unworthiness.

It may help to find additional ways to keep the memory alive for those who have died by creating a special memory book or holding a service.

Remind yourself that you are struggling to make sense of one of the greatest mysteries of the human race. Rather than explaining it away, try to embrace the mystery.

Source: The Brain Tumor Society
By Roberta D. Calhoun, ACSW, LICSW – The Brain Tumor Society

Categories: Uncategorized | Tags: , | Leave a comment

Create a free website or blog at WordPress.com.

%d bloggers like this: