Are you ashamed to be ill?
In our competitive society, chronic infirmity or illness is viewed as a personal failing rather than the random stroke of fate that it is ~ Angelika Byczkowski
I recently spotted a post on the Kevin MD blog writen by Angelika Byczkowski, a patient with Ehlers-Danlos syndrome, group of inherited disorders marked by extremely loose joints, hyperelastic skin that bruises easily, and easily damaged blood vessels. Originally published on Inspire with the title Embarassed To Be Sick, Byczkowski argues that in today’s society chronic illness is viewed as a personal failing.
With cancer being viewed increasingly as a chronic illness, I thought it would be interesting to probe this further in Journeying Beyond Breast Cancer, and explore your thoughts on the topic.
Byczkowski points to all the things her illness has taken from her starting with her income and career fulfillment and success.
I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully, and now I’ve lost it all.
She notes that when one’s illness is temporary, there is understanding and sympathy, but woe betide you if you are diagnosed with a chronic illness for then people “become impatient and distant and I detect an undercurrent of belief that I must have done something to deserve this – something they can avoid doing.”
I see some interesting parallels with cancer in this. Being diagnosed with cancer once may be regarded as a misfortune by society; twice looks like carelessness (to paraphrase Oscar Wilde). As a society we want to believe that we can control our destiny (and our health) and those of us who “fail” at this are labelled “victims”and “sufferers”. It’s a bleak indictment of our society and while a part of me really wants to believe this is not how society views those with incurable illness, an even larger part wants to believe this is not how the person views themselves.
And leaving cancer aside, this same attitude extends to those who are experiencing infertility, those who deal with depression and other mental health issues. There is a lot to question and explore in this topic and as always I am really interested to hear your view.
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Oh yes. Even before I got the clean PET scan I was told to keep up the positive attitude and start looking for a job right. I had a career (http://www.linkedin.com/in/victoriaf) and was looking for a better opportunity when I got diagnosed.
Why does it bother me so much when people ask when I will get back in the game? Because I feel guilty and a bit ashamed. I’m a slacker, a woman now dependent on her husband’s income who sits at home and “does nothing.”
I don’t know how to explain that I need time, I’m not “cured” and I just don’t think I can do a 50-60 hour week which is common in my profession. Since when is “doing something” automatically tied to paid employment and those of us who aren’t there right now are seen as “doing nothing?” I write a bog, I volunteer at church, work as an activist….
And there I go again, trying to justify myself. Why is it not enough to say, “I just need to live at my own pace right now.”
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What a great comment Victoria. I really appreciate you adding to the discussion.
Victoria, I so get your response. Since all the stuff that came with cancer, I haven’t returned to full time work. I feel like I’m doing so many good things – and yet, perhaps not measuring up to where I should be or what I should be. Isn’t that strange? Though I wonder if this pressure really comes from outside, or is it something within myself that won’t accept this way of life?
Very good post Marie, and it raises some big questions. Part of me wonders if that lack of acceptance or compassion is a result of a lack of understanding. Certainly I find myself seeking support from communities that ‘get it’ more and more, rather than bringing those worries to those who haven’t shared the same experiences. ~Catherine
I think Pema Chodron was on to something when she talked about The Tyranny of Expectations. We expect a lot from ourselves and sometimes feel that we are at the mercy of what others think we ought to be doing.
But I really like what you said, Catherine, about understanding. Are people really chiding us or are we interpreting what they are saying through our own mental filters? There is a great saying in AA about not trying to match people’s outsides to our insides.
Victoria, I love that line from Pema Chodron, one of my favorite teachers. It really applies to me!
I’m not part of a cancer community, but I know about being chronically ill, and expectations. I think people expect me to be bedridden or fully functioning, when my whole world is managing the inbetween. What I can do today I may not be able to do again for weeks; that’s complex for me to understand, never mind anyone else.
Ah managing the inbetween – what a great phrase and one I understand so well too. Thanks for sharing your perspective.
I am asked over and over when my treatment is going to end. It isn’t!! No one wants to hear that. They want a set end date so that we don’t have to talk about my side effects much longer. But that’s not what Stage IV is and it is really hard to convey that concept in our feel-good and make-things-better society. The color black doesn’t mix too well with pink. So be it. Thanks for bringing this issue to the forefront. xo
Jan, thanks so much for your comment. Your voice is so powerful in this discussion.
thank you for bring up such important questions – ones that are often imposed upon us, and those we sometimes impose upon ourselves. for me, when starting chemo for ST IV BC, i had very few of the more dramatic side effects like nausea, vommiting, pain at the infusion site, et. al. but there were some effects that were random and scary – travelling pain that i never knew from one moment to the next where it would strike. it made me cry out, and then it made me sob in despair, because i wanted to be grateful for escaping the more severe ones, and feeling vulnerable and scared meant, to me, i wasn’t grateful enough. it did make me feel ashamed, because it chipped away at my inner determination to be “strong” .i hid thoses awful attacks of pain for a long time until i finally told hugh. he gave me a new perspective – i could be strong within myself in spite of that damn pain. he helped me get outside of those awful emotions and that helped me be more rationale, talk to my oncologists, and find ways to keep the pain at bay. it was just a little blip on the big horizon of the cancer experience, but i taught me a good lesson; the tyranny of expectations that victoria spoke about, that i imposed upon myself.
This is a great topic, Marie. I love what the other commenters had to say also. I know people haven’t really understood the lengthy recovery I’ve had. They say they do and mean well, but then they have expectations on me for social activities that I’m not up for, which shows they don’t understand my words. On more than one occasion, I’ve pushed myself and wished I hadn’t, and only because I was embarrassed to keep turning down social invites.
There is so much in this post and discussion, Marie. This is a real “elephant” which is in our living rooms, workplaces and even on street corners! For earlier stage cancers, we are expected to have moved on if we articulate fears, worries or scares. As Jan says, for stage 4 treatment, people are uncomfortable with the thought that it will go on and on. I also find that the side effects and lingering effects of treatments and long term medication are difficult to convey. We live with some pretty heavy changes often, due to treatment. It is hard to convey how debilitating that is. I love the expression “managing the inbetween” That is exactly what it is. I realise that this is not only related to cancer and other illnesses which people are uncomfortable to talk about. It relates to other situations which make people uncomfortable. The obvious one in my mind is grief. There is an inbetween there too. I don’t expect, nor want people to talk about my father all the time, but nor do I want this to be gone, swept away and ignored. The fact is that grief is a long and painful process. The inbetween is probably just the feeling that folks understand that we are fragile and are sensitive and supportive.
That is the crux, We might be fragile. But that does not mean the same as weak. The two should never be confused.
I am not ashamed to be “ill” but I am very tired of thoughtless comments and the whole “positive attitude” thing. I had a neighbor that I thought was my friend but am starting to distance myself from her because her self centered attitude. I have done things that have made her life easier when her family was going through some difficult times with her mother’s health and her husband needing knee surgery. I made meals, I mowed their grass, walked their dog, and even cleaned cat boxes out. She called me one day to ask another favor and I explained that I was going to get a followup mammogram the next day. I told her that I was really nervous about having it, since the previous one had resulted the in having a botched biopsy and hematoma. All the mental stress that goes with that call back and then it was negative. As I told her that I couldn’t commit to doing what she was asking, my voice started to break. I said that it was scary and hoping they didn’t think they “saw something” again. After I got off the phone with her, I took my dog for a walk just to try and get my mind off of it. I saw her husband walking their dog. He told me that his wife said that she had to listen to my crying on the phone! Wow, if that wasn’t a kick in the teeth! I guess I’m good enough to do chores for you but don’t ask you to repay it with a little sympathy and compassion. With many other people I know on a social level, since I didn’t have chemo, they didn’t understand why I didn’t bounce back in a few weeks. Maybe the ongoing pain and truncal lymphedema could have just a little to do with it!
Great topic. I do think there is shame associated with illness sometimes. Once in a while, I feel ashamed for being the only one of my siblings to have cancer. I know this makes no sense, but still…
I also think there is shame felt by some who don’t feel they are doing cancer right, or whatever the illness might be. This is why being allowed to feel and speak your own truth is vitally important. Thanks for writing about this. It’s something I’ve thought about quite a bit.
Thanks to Fiona for alerting me to this perspective from the blog of a primary care physician
I struggle with this every day. I have metastatic breast cancer – 3 separate diagnoses. I feel well much of the time and I look healthy but I’m off the career track I was on and really living life in limbo. It’s one of the very hardest things for me.
I’ve struggled with this for years, beginning with severe CFS/ME, cancer and several other serious conditions. I was “relieved” last year when an inherited genetic immune deficiency was discovered; finally I was “justifiably defective”! It doesn’t help to be seen as ‘invalid’ by society, deserted by one’s former partner, and to be financially stressed all the time (despite my 9 years post-secondary education). I know some of my family members still think I “get paid for doing nothing” (Disability pay), and that “it must be nice to nap all day”, but what I would do for a day with enough energy to do all the things I’d like to, let alone need to do. The illnesses are only part of what is difficult…the attitudes are another, and that’s where the shame creeps in. Learning to be well despite the ‘unfixable illnesses” is a constant balancing act. I work on keeping hope alive, not ‘hoping for a cure’. There is a freedom in that that few can understand.
Well, I feel pretty inept about not being able to work in an office, though I had challenges that made it hard even before cancer, but near impossible now. I do my best with what work I can do at home for peanuts. And as far as the whole topic of people talking to us like we should just be able to pull ourselves up by the bootstraps in a week, a month, a year or whenever they think, well, so easy when it’s not you to tell people what they are supposed to be doing and thinking now.
How are ya, Marie I’ve been near computerless for some time so haven’t been on much. Am dumping my Mac cause no one can seem to figure out multiple problems. I am lucky in that the store where I bought it is going to give me a full refund to put toward another computer even though this one is a year and a half old. YIPPEEEE! So I’ll be back once I get caught up. take care.
Great comment Rachel and great news that the store will replace the Mac for you! Result!
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So much money and manipulations are being invested to make us ashamed, of our passing youth, of our physique, of our weight, of our lack of wealth and health… A newly diagnosed lady that was talking to me the other day, started by saying: “I am a very healthy person…” The fraction and disappointment within our Self-conception, which is being cracked with diagnosis, and the world which is telling us: FIGHT \ SURVIVE and doesn’t really want to hear about our nausea and leg cramps, are eventually condemning us for shame.
Terrific post Marie, and such intelligent responds. Shame and Pleasure…
Thank you for such a great post with its insightful responses. Certainly, as someone both managing Ehlers-Danlos Syndrome and managing a recovery from breast cancer (diagnosed in Dec 2013), it took a great deal of exploring identity and how I/We ‘value’ ourselves, and are valued, before I was able to move resolutely away from a sense of shame. I am now in a place where I am seen as ‘inspiring’ and ‘strong’, terms which again feed into illness narratives which I am very uneasy with. I now take time out for ‘healing’, and constantly look for ways to negotiate my ‘public persona’ (seen out & about when well enough) and my private one (too ill to go out). So Speccy’s comment about the ‘inbetween’ resonates very well with me.
This is a great article. I am about to have my last round of chemo and then follow up with radio therapy. Now I can see the end if the treatment I am starting to wonder how I just go back to my ‘normal’ life when I don’t really know what ‘normal’ is now.
I think until recently I thought I would just bounce back after all the treatment was finished but now I’ve had time to think about it I’m realising that’s not really how it’s going to be. I can’t imagine going back to work and doing even mundane things again because I don’t have the confidence I had before my diagnosis. This has been a psychological battle for me as much as a physical one, but the psychological one will continue for much longer. It seems too that the support is there when you are going through it but is there any afterwards? I am a single parent if an almost 5 year old and I need to get through this for him. But will I ever get back to ‘normal’?
Hi MJ, I struggle with this too. So much has changed. I feel as though my life has been pared down to essentials (and everyone has to define those things for herself). I find that most of my healing happens in my garden. I’m at a loss though to explain how I feel to the people I love who are concerned because I’m not rushing out to get a job (but you had a career!) or worrying too much about stuff that seems small to me these days (but don’t you CARE about X, Y or Z?) Not so much, I reply. I’m just happy that the fig tree I planted (which I was sure was dead) finally came to life a week ago.
One of my readers was just diagnosed (stage 2) and I sent her this quotation from Christian Wiman because he says it better than I ever could. The world needs more poets and not so many IT workers like me. 🙂
“Eternity, the idea of it, is a powerful magnet for the mind, but the heart
remains unmoved. It is a truism to say that we are never more alive than
when we are close to our deaths. (It is also at times, if said of one
whose suffering has swamped his humanity, an obscenity.) Yet under the
easy gesture toward this fatal intensity (easy so long as it is safely
intellectual, remote from us) there is a sharp edge: it may take an
illness for you to feel that edge, either in your body or in the body of
one you love, or it might simply be a kind of cut in consciousness so sharp
that there is a pause between you and all that is not you, and like a
quick-handed cook whose deft slicing suddenly opens his own thumb, you are
stuck in the shock of watching.”
Reblogged this on takeawareness2action.
Thank you for sharing this topic. I don’t belong to the cancer community but my heart goes out to all the persons affected with it and other terminal illnesses and health issues. I believe that a big part of our health depends on our lifestyle, eating habits, activities, etc… those we do have control but even the people with the healthiest lifestyle can get sick. There are just a lot of things we don’t have control of. A large part of me also wants to believe that an ill person is not a failure at controlling their destiny. I think the society should be more compassionate and understanding instead of judging the person. Sending everyone healing thoughts and prayers!
Hi Lorie, thanks for stopping by and sharing your thoughts. I sure do appreciate the input. Marie
I don’t even know how to respond … I keep telling myself to get over it and fight, but it’s real!