Having a chronic illness is difficult. Sometimes I’m in control of my illness and other times I sink into despair and that’s okay. There is so much in life I want to accomplish, so much I experience I want to repeat. I never know when I’ll have a good day or when my symptoms will return, that makes it difficult to plan things in advance. Even planning an outing on a good day, will most probably finish early because the pain will have surged and I have to stop.
I still have a lot to learn and a lot of adaptation and acceptance to work on. My journey is only beginning. I know I have to learn the following:
- Stop competing with healthy individuals
I need to understand and accept that I am not obligated to do everything a healthy person does. I’ve always been the caretaker. I’ve always been the one person people depended on to get things done. I can still be a caretaker, but I can’t do so at the same level I used to.
Fighting pain is difficult and those of us with daily pain never get to rest. The constant struggle of trying to stay physically in control of pain is draining. The daily demands of having a job, running a home and raising kids are cause for extreme fatigue.
This is difficult to accept. I feel guilty. I stress knowing that I have so much to do and know that much of it I will not be able to even start. I am not lazy or faking it for attention. The truth is that I do things at pain levels others would even consider moving at because if I don’t, I won’t have a life. The truth is that there comes a point where I can struggle through, I will simply lose the ability to walk, think and exhaustion will take over and demand that I rest.
“If I continue to define myself by what I can’t do, or what normal people do, I will destroy myself.” – Unknown
2. You don’t have to be an inspiration to others
I am not obligated to be an inspiration. I need to stop comparing myself to other people struggling with illnesses. Their stories are different than mine. They have probably walked in my shoes and cried behind closed doors just as I have. I need to let myself freak out, learn to forgive myself, and try again another day. I am allowed to have bad days.
Some days I’m in a bad mood, but that’s because I’m dealing with chronic pain every day of my life and it’s simply asking too much effort to put on a smile that day. It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty. I worry about my future. I fear that I will get worse. It’s emotionally draining. Tomorrow might be better.
“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” – Unknown
3. I don’t have to fake it.
I need to remind myself that I am not obligated to hide my illness in order to make other people comfortable. It seems to be easier to say tell people I’m fine and put on a fake smile, but it takes a lot of energy and concentration to do so. I shouldn’t have to hide what I’m going through.
Guilt is the biggest element of my chronic illness I struggle with.I have to remind myself constantly that I don’t have to apologise for something that is out of your control even though every fibre of my being is screaming that I should. Having a chronic illness that holds you back and it makes you feel like you let people down. The worst feeling in the world for someone who always been the caretaker is to be the one needing to lean on everyone else for help.