We are not to blame for our long term illnesses

A photograph of an ancient asian scholar in the British Museum.Acceptance is an important part of living with chronic illness. Part of acceptance means realising that you have to put aside your feelings of “why me” aside so you can begin to appreciate what you still have rather than mourn what you’ve lost.

In the first few years of diagnosis (and even after then) many people will approach you upon hearing that you’re unwell with their suggestions for what might help or solve your pain or fatigue.

I still consider it the height of arrogance to approach someone who’s been unwell for years with a simple or quick fix. The reality is that no one really knows the causes of many chronic conditions, so by that logic no one can easily solve the issue without knowing what caused it in the first place. It’s well meaning but sort of implies you’re ill because you’re not doing something right — when in reality, you’re trying your best.

Your illness is more than likely something you were born with, or something that you have a genetic disposition for. You just got unlucky that it was activated at a random point in your life.

You’re not to blame for your chronic illness, and here’s why.

We haven’t done anything wrong

For in example in my case I’ve done everything that I should. At the time of my diagnosis;

  • I was a healthy weight
  • I was active and exercised as I should do
  • I had a relatively good diet
  • I didn’t sit for too long
  • I used to hate taking tablets and medicines
  • I’ve never owned a car and walked or used public transport to go everywhere.

Here’s the thing — no one is certain of the causes of chronic diseases. It’s too simplistic to say that I somehow caused my endometriosis myself. I haven’t stopped all of my good habits since becoming ill, in fact they’ve increased and even become even more important behaviours to help me manage pain.

I use a standing desk (so a rarely sit for too long), I do not own a car, drink alcohol or eat meat. I do the recommended amount of daily exercise for someone of my age and weight, and I do daily physiotherapy and strengthening exercises. If I have to travel, I cycle, if it’s too far I get a bus or the train. I remain a healthy weight and all in all I take even better care of my body than I did before I was sick.

If I didn’t continue doing these things I believe my experience would be a lot worse. I firmly believe a body that is strong and well looked after experiences less pain.

It’s unlikely we did anything ourselves to cause illness. I believe endometriosis (and joint hyper mobility syndrome) is something I was born with, something I had a genetic disposition for. I had no more control over my chances of developing illness than I did the colour of my natural hair. I am half of my mother and half of my father, and somehow that combination led to me, with all my perfections and complications. No one (least of all me) can change a thing about my physical status. This was determined over 30 years ago when I was in my mother’s womb.

I can merely tolerate the pain as best I can, and carry on despite it.

However, I will not tolerate anyone saying that sedentary behaviour has caused my illness. No one is certain of the cause of these illnesses or we would be certain of the cure. The source of the problem would indicate the end, and you should be wary of anyone who claims to have a cure for any disease. Even the experts will admit they have more to learn. No one has sorted chronic illness definitively.

And therefore no one can determine what might have caused it in your case. You are absolutely free to speculate for yourself, I just don’t think others can do that for you (unless they’re working in peer-reviewed science or existing, proven medical pathways of care).

You’re doing your best

Guilt is extremely common symptom of chronic illness, and over the years I’ve had a couple of people imply that my daily pain is because somehow, somewhere I did something wrong. We feel enough guilt about where we are and what we can longer manage without someone stating it’s something we’ve brought on ourselves.

I’m almost certain you haven’t done anything wrong (not that I need to tell you). However it still angers me when someone says something along these lines with next to no background of your circumstances or your medical history.

Diagnosis by assumption isn’t helpful to anyone. Neither is guessing about what might help or have caused something in someone. Everyone’s different. We all know by know that chronic illness really isn’t that black and white. It’s not really something that people who are well can really appreciate.

Either way, you’re always doing your best. Always remember that, it means this sort of well-meaning (but utterly misplaced) attitude from others will become easier to manage.

One of the things we’re taught in pain management is to only focus our energy and worry on things that are under your control. It’s hard to do, extremely hard to do at times, but if you think about living with illness in this way it does become easier, ever so slowly, to just let the things that aren’t helpful go.

Life often doesn’t go the way we planned. How you survive your situation with poor health is up to you. However the most successful and happy people I know with illness and disability don’t blame themselves for their situation and remain ever inventive. They find new ways to manage with their limitations rather than mourning what they’ve lost, or thinking they are in some way to blame for how life panned out.

Best of all, they know when to tell someone that they are the experts of their story – and can point out when someone is wrong with their assumptions about them. It takes time and confidence, but anyone can get there.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability