Why a Good Day With Chronic Illness May Not Always Be Good for Our Mental Health

I know all patients with chronic illnesses are unique and have their own individual struggles. But I think the one thing we all have in common is the sheer unpredictability of living with a chronic illness. Most of us have good and bad days, or at least bad days and not as bad days. I actually compare it to a gambling addiction. One of the worst things for someone with a gambling addiction is to actually win. When that happens, the mind can convince itself that it will happen again and again, if not every single time.

I think it can be the same for someone living with a chronic illness. In some ways, having a good day can be the worst thing for us mentally. Don’t get me wrong, my good days are precious to me, but I find myself expecting the next day to be good also. And the next day, and the next day, and so on. When I have a good day, my mind convinces me that I can replicate it the next day. There are definitely things I can do to improve my chances of having a good day, like getting plenty of sleep and staying indoors in the air conditioning during the summer months, but many times it doesn’t matter what I do to try to ensure I have a good day. My body just laughs at me as if it’s telling me “not today.”

A lot of chronically ill patients desperately want understanding and acceptance. I try to make my loved ones understand and accept the unpredictability of my disease, but how can I expect them to, when I refuse to accept it myself? One of the recurring themes I hear a lot about chronic illness is that acceptance is crucial. I have recently come to realize that I am never going to fully accept it 100%. I am still stubborn enough to believe that I have any control over it.

One of the ways I have accepted my diagnosis and my life in a wheelchair is that I am constantly looking for life hacks that make my life easier. For example, one of the best investments I’ve made was a bed rail. I also have changed to a shorter bed frame. Those two things make getting in and out of bed so much easier. I have made other adjustments in my home to make life easier, like arranging furniture around the edges of a room to give myself as much room in the middle to navigate in my wheelchair. I also do not subscribe to conventional aesthetics in my home any longer. I used to always make my bed with aesthetic bed coverings and throw pillows. I no longer care how nice it looks. I am all about functionality and convenience instead of aesthetics.

I didn’t realize how much I had come to depend on my life hacks and “conveniences” as well as my routine. It became painfully obvious during a recent road trip I took. Just the little things like placement of the furniture, location of electrical outlets, and the layout of the bathroom were challenging. Trying to navigate without my routine and conveniences proved to be more difficult than I anticipated.

One thing that experience helped me to accept is that it is OK to do as many things as I can to make tasks as easy as possible, especially when in an unfamiliar place or situation. I’m not sure if it was a lack of self-love, or how I grew up with the societal expectation to be totally self-sufficient that caused me to refuse to do many things to help make my life easier, and to not accept help when it was offered. In my mind, that was “cheating.”

If I could give one piece of advice to people living with a chronic illness, whether they have been recently diagnosed or they have been navigating it for a while, is to learn to swallow your pride. Accept help from others when it is offered, and use as many aids as you can to make your life easier. This life is difficult enough without adding unnecessary pain and suffering, both physically and mentally.