I just wanted to take a moment and speak a little bit about disability, and chronic illness since it’s something I live with.
For those who don’t know, I live with multiple autoimmune diseases. (My mix includes systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s and Raynaud’s.) This means my own body’s natural defenses don’t just attack invading viruses and bacteria, but it also attacks my own, healthy tissue, muscles, organs, etc. It’s like “friendly fire” where my immune system shoots everything, not just the enemy.
Autoimmune is progressive and degenerative, meaning the effects will always get worse (not better), and they are cumulative so they start off mild, but the damage will build and continue to get worse the rest of your life. This makes every person with autoimmune their own, unique case, depending on where they are in the process of their disease(s). Additionally, most people diagnosed with one autoimmune disease, will eventually be diagnosed with additional ones as their disease(s) progress.
First, it’s important to recognize that EVERYONE’S EXPERIENCE IS DIFFERENT. Multiple people can technically have the same disease or illness and yet, live wildly different lives, with different impacts and limitations. Just because you might know someone with an specific health condition, doesn’t mean every person with that health condition will have the same outcome or progression.
Secondly, most of the damage and pain is INVISIBLE. It’s *internal* where it can’t be seen from an observer. The person can look perfectly healthy and “normal” and yet, be suffering, in pain, have organ damage, etc. on the inside you’d never know. Just because someone doesn’t look sick, doesn’t mean they’re healthy.
Third, like any illness, some days are better than others. Some days are worse. Chances are, the days you see the person with autoimmune disease(s), are the days they feel better. So you might again mistake their participation for being “fine” when in fact, they might need days to recover after. You don’t see when people are struggling because people don’t tend to share when they’re unable to get out of bed because of their illness. And just because they did something once, doesn’t mean they can do it often, or even regularly.
Fourth, autoimmune is unpredictable. You can’t really know how you’re going to feel on any given day in the future, so it can be really hard to make plans. People who live with chronic illness might come across as “flaky” or prone to last-minute cancellations, but that’s because plans may have been made when they were feeling good, or they were optimistic about doing something. Trust me, it doesn’t feel any better to be the one forced to cancel or change plans when your body says no. It’s frustrating and can be depressing to look forward to something but then be unable to do it the day of. This is also why many people with chronic illness are unable to maintain a “day job” or work rigid hours.
Fifth, please don’t ask if they’ve tried “X.” I know it comes from a good-hearted place, but it’s very frustrating to be told if you only tried yoga, or ate raw cocoa, or did more exercise, or stopped eating gluten or any other number of “health cures” that they would get better. There is NO CURE for autoimmune. Yes, there are dietary changes you can make which might help in some cases, and there are lifestyle things you can do to aid in chronic pain and such, but they are not a cure all! Assume they are working with their doctor and following medical advice and personal experience and already doing the best they can and leave it at that, please.
So if you got this far, congratulations! I appreciate that you want to learn and hopefully some of this can be helpful moving forward when dealing with people who have chronic illness.
I am open to questions if you wanted to know more about anything I personally deal with. While of course, I can’t speak for everyone’s experiences, I am happy to share more about what my daily life is like if you want to know more.
Thank you for reading and for your continued support.