The Mighty Logo

6 Things I've Learned Along the Way With Chronic Illness

The most helpful emails in health
Browse our free newsletters

I have learned a thing or two along the way. Forgot some and learned again. Learned the hard way. But learned.

I have learned to pace myself or I will suffer the consequences of not doing so. I have also learned there are times I am willing to suffer the consequences on specific occasions if I have the recovery time. Like I went bowling with work for a charity event because it was for charity and I love bowling, but there is a mighty price to pay for bowling; I happened to have time off after to recuperate.

I have learned to stay within my limits. However, I have learned this doesn’t mean not doing things or trying new things, or testing my limits on new things. With exercising, for example, you have to find where your limit is to find your starting point — they say the “edge of the alarm” pain. That is a limit. And go from there, slowly and steadily increasing as you go along. Well, life is like that. I want to do something and it depends on my existing pain and my existing energy and now time I may have after… and therefore where that limit may be. So I give it a go and nudge it a little to see if I can in fact do that thing that day or not. I learned limits are there to remind me not to exceed them, although it happens sometimes, and they’re not so much there to limit me from living my life.

I have learned that work doesn’t define who I am and my self-worth. With chronic illness, so often we have unstable work situations and careers. It is such an unfortunate thing when we have so very much to offer. I had to learn that I am not what I do. I was on long-term leave for a couple of years and in that time my self-worth took a hit and I had to redefine myself without work. I had to understand my innate worth. We are far more than what we do for a living. So I have taken a part-time job that eases my health and maybe it will do nothing career-wise, but it is good for my well-being.

I have learned my mental and emotional well-being are just as important as my physical well-being, if not more. Chronic illness is stressful and we have to understand the impact it has on us mentally and emotionally. As well, of course, as manage the mental illness disorders we have. I have depression associated with chronic pain, which I ignored and thought I could handle on my own for many years. I spent many years battling a brain that simply didn’t want to survive. Exhausting. Addressing this directly and taking medication for it not only helped with the depression, it has affected how I cope with the pain.

I have learned self-care is one of the most important things. We need to take care of ourselves and put ourselves first once in a while. Especially on the bad days, we need to take care of ourselves. Took me a long time for this one because it seemed I should spend every extra moment being productive since it took me so much longer to get things done. I’d feel guilty if I did self-care.

And I have learned to rest when I need it and to not feel guilty about that. We need to conserve our energy and manage our fatigue… it is part of pacing. Again… that guilt thing plagued me for some time. Finally I understand it is necessary for me to take care of myself.

We learn. We adapt and we cope. It is the chronic illness lifestyle. I refer to it as a lifestyle because we live in a specific way to manage our chronic illness. A slower paced lifestyle, one where we have adapted and coped to live the best we can with the illnesses we have, with that desire for improvement of course. What I have learned is, from my experience, our perception of our illness evolves as we cope, not to mention we gain a certain level of acceptance.

Originally published: September 27, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home