This is a delicate topic because we often equate responsibility with fault. Indeed, I still do, and I am consciously working at changing that.
So I will explain what I mean right at the beginning. What has happened to you is not your fault. Your chronic illness and how it has progressed is not your fault. The things you now can and cannot do because of your chronic illness are not your fault.
How you manage your chronic illness is your choice. How you manage your chronic illness is your responsibility. You’ve been dealt a crap hand. What you do with that hand is up to you, and that is what I mean by responsibility.
We have a choice of how to manage our chronic illness, and every minute of every day is a reflection of our choices. Some days I choose to manage my chronic illness by being proactive and booking myself treatments (acupuncture, personal training, chiropractor, etc.). Other days I choose to manage my chronic illness by going back to sleep. My choices change depending on what my chronic illness is doing – this is a necessity. While I could choose to go on a run on days where I’m in a lot of pain and fatigue, that would be an irresponsible choice, because the next day would be worse. However, if I choose to have a nap on days where I’m in a lot of pain and fatigue, or do something that requires limited energy expenditure, that is a responsible choice, because it gives my body the rest it needs and sets me up for a (hopefully) better tomorrow.
This is what I mean by ‘take responsibility for your chronic illness’. Don’t passively allow things to happen, make choices. Even if that choice is to stay in bed, consciously make it. Taking ownership of your actions and reactions is incredibly powerful, even if you don’t do anything differently to what you always have. It gives you a sense of strength, a feeling which I regularly find myself lacking in. It can also give you a sense of achievement. You choose to do a thing, you then do the thing, you have achieved what you set out to do. That’s an amazing thing. Yes, even if that thing is having a shower!
Last year I really grabbed the bull by the horns and took responsibility for not only my chronic illness, but also a substantial injury to my wrist. I decided I would do everything I can to improve my body so that when I did go through surgery, and the subsequent immobilisation of that arm, I would have a lot of good fitness and wellbeing to fall back on. Since then I have attended personal training twice a week (most weeks), acupuncture, and a chiropractor. The first several months I slept around those appointments, as each treatment took everything out of me. I went through months of napping in the morning, in the afternoon, and then sleeping through the night. Now, after almost a year later, I am able to walk around without my cane. I went for my second Couch to 5K ‘run’ (it was a slow jog). There are days where I don’t need a nap. This is all down to making an active choice to change the status quo, to respond to my injury and chronic illness by working to improve my fitness and overall wellness.
Sometimes the good choices are hard choices. Sometimes the good choices are easy choices. Sometimes you don’t have the energy to make the good hard choice so you make the easy choice. This is okay. This is being responsible for your chronic illness and for your life.
(I just point out here that I am incredibly aware of my privilege with this. I am privileged to have enough money to be able to afford these treatments. I am privileged to have enough time and energy to be able to attend these treatments. I am overall privileged to be in a position where I have these treatments available to me. Not everyone does, and not everyone can. Be kind to yourself above all and do what you are able, and do not beat yourself up for what you are not able to do.)