Ah, the life of living with chronic illness. When you say “yes” to that one extra hour of something people asked you to do, when you stay up just a few hours later, when you skip that one meal- even though you know you can’t do any of that because then you end up extremely sick.
Why do so many of us with chronic illness fall into this trap? Well, first, we want to be able to do all the things. Second, as soon as you tell someone that you have limitations on your time, they tell you “Well, I have to work to,” or “yeah, I hate to work when I have a headache too,” or “I wish I had the luxury to sleep.” This shame from others around having chronic illness is usually the thing that leads us to do things that are unhealthy for us.
Here is the thing- living with chronic mental and physical illnesses is not a luxury. It is a restriction that none of us want to have.
The reality is that I do not have the luxury to go to bed even 30 minutes later than normal or wake up an hour earlier. I do not have the luxury to work/volunteer/parent at all hours of the day and have a packed schedule. I do not have the luxury to eat at a restaurant, skip meals, or just grab food from the fridge. I do not have the luxury to create or take on whatever schedule I or someone else wants (kids, job, friends, etc…)
I realize that I have way more privileged than most people like me. I can only imagine what it is like for others with chronic illness who do not have a partner with a job, a roof over their head, an understanding workplace, or other help.
Life really does not have to be like this for us, we could function to the best of our ability, if only it was ok to be a little bit different.
Those of us with chronic illness often can do a lot of work, contribute to the community, and be great parents, as long as we are allowed to do it a little differently. Some people need a job where they can work from home or have unconventional work hours. Some people need a bit of help with food prep or shopping. Some need to be very strict about their work hours, sleep hours, and care for others hours.
Honestly, we are usually able to get more work done in less time than other people because we have always had to work hard, while in extreme pain, in order to do things that other people take for granted. We know how to maximize our time because it is so precious to us. We are very focused and determined because we have always had to be. We get our stuff done because we have no idea if we have the luxury of time and wellness in the next hour, day, week, or month.
What I would suggest, for all of us, is that we stop comparing/judging someone else’s needs against our own.
Just because you may be able to work at a job 50 hours a week, volunteer 10 hours a week, rarely sleep, and take care of your kids, that does not mean everyone can.
Going to work with a headache is not the same as attempting to work with fibromyalgia, a migraine, or IBS. Even those of us with chronic illness should not judge others because even people with the same illness need different ways to treat and manage it. So, I don’t get to tell other people with bipolar disorder how much work they should be able to do.
Our lives are more amazing when we are in community together and we help each other out. I love to see the great things my healthy, neurotypical friends can do. They always give me inspiration and they are often the ones who will help out if I need it. (Honestly, people who can go to the grocery story are some of the most amazing people I know. I have no idea how that is so easy for them. It’s a skill!) I believe that the world also needs those of us who are atypical because we are examples of how to get through adversity and be grateful for any time that we have. I also think we help our friends know when it is okay to say “no” to something in order to protect your health and life.
We can all be good role models for each other when we are allowed to work within our abilities.