"Chronic Illness Means Never Being Able to Forget"

Thus was the title of this week's Cases piece in the NY Times. The author wrote about not being able to donate blood after a diagnosis of ulcerative colitis (i.e., Crohn's disease), despite her illness being in remission for several years. And oh how true it is for those of us with eating disorders, too!

Because I am entering Year 3 of a robust remission, I rarely think about my disease. I don’t spend time worrying about another attack on my colon by my immune system. I don’t contemplate the fact that azathioprine increases my risk of lymphoma and liver damage — or that the only true cure for my disease is surgical removal of my entire large intestine.

But the rejection from the Red Cross revived all that mummified information. It reminded me that my body is rebellious and will always require diligent medical management.

And unfortunately, that’s how chronic disease works, at least for me. Just when I think I have conquered the emotional challenges of incurable illness, something reminds me that those challenges are never fully conquerable.

It’s frustrating. I find the mental fortitude necessary to stop thinking about my increased risk of colon cancer. I convince myself I can live without my large intestine if it comes to that. I tell myself that I am like any other 32-year-old, ignoring the many difficult questions I will face if I want to have a baby.

And I can believe it, all of it, because while I am in remission, I don’t have to confront my disease. Until something happens to remind me that I am not like most other 32-year-olds, that my ulcerative colitis is inescapable, my shadow.

Then I wonder if maybe I am just feeding myself lines to get through the day. And I panic. And all my emotional progress feels lost.


That's the thing about eating disorders and other chronic illnesses: we can recover, we can move on, but we can never forget. I can't go back to eating without a care in the world because the stakes for a missed snack or missed meal are infinitely higher. I have to think twice about engaging in certain activities out of fear they might shatter my already brittle bones. This hauting isn't my whole life or even the majority of my life, but there is a profound sense of grief when you come to know that you can't escape your past.

What did you think of the article? Share your thoughts in the comments section.

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8 comments:

Libby said...

Wow. Yeah. Thanks for this one. So true.

Cathy (UK) said...

I can see the analogy between anorexia nervosa (AN) and inflammatory bowel disease (IBD) - in that both have the potential to be chronic, to have a course of remission/relapse and to be fatal... However, I don't view the two illnesses in precisely the same way.

For starters, IBD is primarily a physical illness, while AN is primarily a mental illness. Although IBD can be triggered by diet and stress, it is largely an autoimmune disease. In contrast, AN is triggered by stresses of some sort (which may be a product of one's own mind - such as the conviction one is 'worthless', 'too fat' (etc.), or obvious trauma such as bullying/abuse) and is sustained by the personal 'meanings' the sufferer attaches to their disordered eating, over-exercising, purging etc.

AN does have a biological basis - in that the brain shrinks and maladapts to starvation, which exacerbates obsessive-compulsiveness and pre-disposing traits. Also, genetic factors probably influence the individual's processing of environmental stressors, and response to such stressors. However, whereas the behaviours of AN can be cured (or at least managed) through regular, adequate eating + the maintenance of a body weight that allows the body to function optimally, an individual with IBD has far less control over their bodily function.

In terms of overall quality of life... Although the physical devastation and symptoms of AN can be controlled through diet (in a way that the symptoms of IBD usually cannot be...) some individuals with a normal weight ED may still live with emotional problems and constant intrusive, self-punishing thoughts - and this mental anguish can ruin their quality of life.

So, in summary, I can see the similarities between ED and IBD, but I can also see distinct differences.

Katie said...

I understand where you're coming from with this one Carrie. I have osteopenia, IBS and a load of food allergies/intolerances which were triggered by digestive damage. But these are easier to deal with than the devastation my anorexia has wrought on my education, career prospects and relationships. I am 25, unemployed since the age of 18, I've been to university three times and had to leave three times before completing a degree, and I have only just started rebuilding my social life in the last couple of months - from scratch, as I had no local friends. Everyone I went to school with seems to have jobs and families of their own, and I feel about as prepared for the 'real world' as I did when I was 12, when all this started. And although I think I am quite protected from relapse at the moment - I think personally my recovery is strong enough that it would take a good few months of finding it hard to eat due to a physical illness before I was at risk - there is still this to consider. I can't become complacent.

So yeah, it sucks sometimes. But alternately, I'm also very grateful that I'm still alive. Many people with eating disorders will never have to live with the consequences, because they will die from them.

Abby said...

I do agree that we can never forget. There will never be a point in time when I will go a full day without food or exercise popping into my head at some point in time. I have an obsessive personality and this is something that will not change, no matter how much time passes or weight is restored. However, it can be manageable.

Instead of likening it to a chronic disease like Chrone's or IBS (which I have as a result), I kind of think of it as an addiction. If I eat less at one meal, I have to be diligent to make it up at the next--I can't just let it go, as it's a slippery slope.

If I engage in a new exercise activity or something, I can't let myself like it "too" much and take it to an obsessive point. It's like someone with a drinking/drug problem that is in recovery. Although it may not be an "active" disease 24/7, they are always aware that even one drink can trigger a relapse. For me, one skip, one extra workout, etc. can trigger a downward spiral.

I can't forget this, but I can move on and move past it as best as I can. Awareness, not forgetfulness.

James Clayton said...

Poignant and sad. You can see parallels and though I tell myself that eating disorders haven't wrought a huge amount of damage, the truth is I just don't know. I'm worried if I've caused myself huge problems for the future and am wary that as much as thing have improved, I'm still a long way from proper recovery. I know I can easily relapse and get caught in a downward spiral and so have got to be vigilant. In terms of damaging your body I look back at when I was most ill and see the terrible state I was in and really get upset at the prospect that it could happen again in the future.

You can never forget an that's a bad thing (it disrupts your life, you hang on to the grief, etc.) but you can also take positives from it and cherish the fact that you are still alive.

What you say Katie ("Many people with eating disorders will never have to live with the consequences, because they will die from them.") really resonates. I can't ever forget that I've suffered with anorexia and that it's caused a great amount of aggravation and pain, but I count my blessings that I'm still here and it hasn't hurt me as much asit could have done.

Laura Collins said...

This resonates for me as well, Carrie. As a (former) caregiver there is a different but similar need to remain mindful if not on alert. The anosognosia of mental illness is a special feature. This role for parents can be positive or negative depending on how all concerned understand the illness and its symptoms.

Angela E. Gambrel Lackey said...

I will never be able to forget. And in a strange way, I'm glad because I believe it has taught me to feel more compassion toward those with chronic illnesses. (Not that I didn't try to feel compassion and I have worked with people with chronic conditions in the past; I just feel it in a different way now.) But also because I developed at an older age (41), I will always divide life before and after anorexia.

I also will always consider myself a "recovering" anorexic. The specter of AN will always be lurking there.

I feel for the lady who can no longer donate blood to the Red Cross; I did that before I got sick and was even the proud possessor of a gallon pin.

C said...

I have Crohn's disease, which is different to Ulcerative Colitis in that CD can affect any part of the gut from mouth to anus whereas UC can only occur in the large intestine. I have had 4 operations, and am currently in remission.

I do live with the knowledge of potentially developing complications and other autoimmune illnesses, as a side-effect of being on immunosuppressants long-term. A large part of learning to live with the illness was to accept that I have to manage it long-term, I had therapy for depression because I had to give up full-time work when the Crohn's flared up badly 4 years ago. I could not think too far into the future because of the risk of getting ill, but the CBT taught me to make plans, and not to worry if I can't follow them through, make other plans instead. I still have a long way to go though, and want to work on my social anxiety.

Incidentally, I think there may be a biological/bacterial cause (and not just genetic) for all illnesses, including mental illnesses. That would explain the overlap and comorbidity between illnesses etc.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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