When I began living with a chronic health condition, I thought I was learning what it was like to not be perfectly healthy.
After years of having excellent health, I was starting to understand physical limitations (I thought).
I was more sympathetic of others who had dietary restrictions (and I was grateful when other people were sympathetic of my dietary restrictions). I was more aware of physical limitations, and therefore more sensitive to people who have them and ways to make environments more accessible to folks who are differently-abled. I thought my health condition was making me a better person by making me more aware of others’ realities.
Then my health condition became debilitating, and I learned there was a big difference (at least in my case) between chronic and debilitating.
With a chronic health condition I could still live a fairly normal life, with some restrictions and modifications. With a debilitating health condition, I rarely leave the house, except to go to doctor’s appointments.
When my health condition became debilitating, I learned there was still a lot I didn’t know about physical limitations and other people’s realities.
In the hopes that others might get a better idea of what it’s like, I made a list of things I never knew before I had a debilitating health condition:
I never knew I would choose to stay home and miss an opportunity to socialize because it was too much work to figure out what clothes to wear in public.
I never knew there would be days (weeks?) that I didn’t have the energy to change out of my pajamas.
I never knew how exhausting it could be to take a shower.
I never knew I could lack the energy to prepare a simple meal like scrambled eggs.
I never knew that some foods could be too exhausting to eat, and that some days all I would have the energy to eat would be foods like soup, apple sauce, macaroni & cheese, or ice cream, that require minimal processing. (Easy to prepare, easy to chew, easy to digest.)
I never knew that I wouldn’t be able to deal with phone calls, and I would just let them go to voice mail, which I would delete every few months when I got tired of the icon blinking at me.
I never knew that it could take too much energy to sit up, so I’d have to lie on the couch instead.
I never knew that leaving my house to go to a doctor’s appointment, to socialize, or to run an errand could take so much out of me that it could take days to recover.
I never knew that I could be so exhausted that I wouldn’t have the energy to fight for my health – that I would ignore incorrect bills or live with health problems rather than fight with the system to correct these things, because I didn’t have any fight left in me.
I never knew that when I got this ill none of my friends would notice, and I would become more and more isolated.
Call to Action: If you have a friend with a debilitating health condition, don’t let them fall through the cracks! Ask yourself, “When is the last time I saw/heard from this person?” Everyone gets busy, and it’s easy to go a while without contacting your friends, especially if they don’t answer their phone.
Texts, emails, or Facebook messages are a great way to keep in touch with a friend with a debilitating health condition.
Other ways you can help your friend: Ask them if there’s something you can pick up for them while you’re out running your errands. Saving them a trip to a store can be a great kindness. Or bring by something for them to eat that they don’t have to prepare themselves (microwave meal, home-cooked, deli, take-out – anything that is easy and within their dietary restrictions). Even fresh fruit or a veggie tray is a great treat for someone who doesn’t get to the store very often.
Finally, make some time to visit your friend (please coordinate with them first – they might not be dressed!). They probably won’t have the energy for a long visit, so stopping by wouldn’t take much of your time, but they would most likely appreciate the company.
Debilitating health conditions can be isolating and can lead to depression – Be a good Wingman/Battle Buddy and keep an eye on your friend. They may not be able to help themselves. Don’t let them fade away.
