An edited version of this post was published on The Mighty
On the surface, I look like I have come to terms with my Chronic Illness diagnosis. I have learnt how to advocate for myself and found words to explain my illness to those around me. I have found some ways to cope and am adapting to live my life around it. However, there is one part of accepting my illness that I am still struggling with.
I am finding it hard to accept that it is not my fault.
I know I am not supposed to blame myself. I would never dream of blaming someone else for their illness. I would be the first to correct anyone else in my position. I know the blame I carry is neither rational or justified. So why can’t I shake the feeling of guilt?
Having a Chronic Illness is like being set up to fail, and I have never been very good at failure. A diagnosis doesn’t come with an instruction booklet. No one tells you how to manage your days, what to do and what not to do. But people around you expect you to have all the answers. It’s like being forced into a tournament, but no one will tell you what game you’re playing or what the rules are. Every time you think you’ve got it and start to believe you’re winning, the rules change and you’re back to square one. And it seems you are only competing against yourself, the better, healthier version of yourself,
trying to get back to who you used to be.
Yet even my best efforts cannot keep my symptoms at bay. A good day for me is still not as good as I or others would like it to be. I am learning to cope by trial and error. And a year post diagnosis it still feels like my errors are more noticeable than my successes.
I blame myself for the days I don’t succeed in managing, thinking “Surely by now I should have got to grips with this.” I feel responsible for every day off work, every cancelled plan, every time I hibernate and abandon communication. I feel guilty for the times I push myself too far and experience the inevitable crash. Or for the days when perhaps I could have pushed myself further but was too afraid of failing. I blame myself for every missed target at work. I am critical of every time the brain fog rips my concentration to shreds. There seems no one else to blame when every change or concession I make, yields no improvement. I am constantly comparing myself to everyone around me and finding myself lacking.
It doesn’t help that I have an illness that has become increasingly shrouded in controversy. Half the medical community still seem determined to treat Myalgic Encephalomyelitis as a mental illness. It is an illness still so poorly understood, under-researched and under-funded, despite the thousands of people affected. Whilst there have been some advances in research to show a biological basis for this illness, this is having little impact on local treatments options.
There are still many doctors who would dismiss me with “it’s all in your head”. My diagnosis came with a course of Cognitive Behaviour Therapy, and once that is finished there will be nothing else they can offer me. They believe my debilitating fatigue is a result of my body being de-conditioned, having too much rest and unhelpful thought patterns. I worry how many people in my life think the same. I am being taught not to trust what my body is telling me. It’s hard to know who I am supposed to be listening to.
In such a climate, it is difficult to validate your feelings and to ask for the help you need. I can fall into the trap of over analysing every feeling, to fear I am misinterpreting every ache and pain. I would give a great deal of money to swap bodies with someone for a day. I long to have someone else confirm my experience, to see my illness through their eyes. And I would love to remind myself of what healthy feels like, to experience a day
without fatigue. It has been so long now that the goal, of a healthy life, gets harder and harder to picture.
I don’t know what the road ahead looks like. The future has become hard to predict. Some days it feels like improvement is just around the next corner, other days it could be a million miles away.
The truth is I am so very tired. I know I am carrying a weight too heavy for my weary body. I cannot do anything about my diagnosis. But I think it is time to learn to lay down the burden of guilt and blame that is pulling me to the ground.
I know it won’t be as simple as saying a few significant words and leaving that suitcase of guilt behind me forever. I know every time I set it down I can choose to pick it back up again. Maybe it will always be there, tempting me on the bad days. However, at those moments I will try to hold out kind and compassionate words to myself, rather than blame. I am human and flawed, I will make mistakes and get it wrong. But every fall will be a chance to get back up and try again.