Being miserable every day is a level of despair and exhaustion you cannot possibly fathom within actually experiencing that. I’d never wish that kind of hell on anyone, but it would be wonderful if others’ compassion would increase just a little. As anyone with a chronic illness will know, non-sick people make irksome comments all the time. “You don’t look sick”, “aren’t you well yet”, “have you tried [insert hot health trend, obscure alternative practice, or advertised pharmaceutical]?”
This topic has popped up all over the chronic illness support world urtging people to please stop making these comments. Of course I will never totally disagree with this: the comments do grind on the nerves and oftentimes the maker of the comments does not realize they are overstepping.
That’s the thing though: they simply do not realize. They do not know. Their life circumstances have yielded who they are today and the things they say. Barring getting sick themselves (a fate I wish on no one) they will never have the opportunity to grow in compassion or knowledge. Unless…
Maybe, instead of allowing oneself to get irked by the barrage of irritating comments, we vow to take a deep breath and answer the person as we would answer a three year old who just said something weird (and if you’ve ever been around a three year old, you know what I mean).
When someone says, “You don’t look sick”, use it as a teaching experience and change the world for better. Instead of “thank you?” or “well you don’t look like an idiot but here we are”, how about, “thank you for your well-meaning compliment, but if you saw my organs where the disease resides you’d realize how unwell I really am beneath my external appearance. My nerves are being affected by growths and my organs are stuck together. I feel miserable and rotten which is why I try really hard to not have my outward appearance match what’s going on inside.” Obviously, this level of explanation is not always appropriate or warranted, but you’ll know when to use ignorance as a teaching opportunity and when to let it roll off your back.
When someone says “you aren’t well yet?” you can say “As much as I wish that was a thing, my condition is misunderstood and notoriously difficult to treat. There’s no cure but sometimes people can go into remission. My case seems to be particularly difficult, so I don’t know if I’ll ever get better.” Ouch. That’s sobering. People do not understand what “chronic” means a lot of times and think that care should be more advanced than it is. Show them how unadvanced it really is. If they get as upset about this as we are, you may have birthed a new endo activist during this encounter.
Another famous pair of comments is this: “My [person’s relation] had that- she [insert treatment option]” and “have you tried that?” It is amazing how many times the person has mistakenly said that the person they know has endometriosis when they actually had something else. Even then though, they are trying so hard here to not be ignorant. They are speaking up only when they are confident that they might know about something you did not know about yet. Of course, they are totally incorrect, but they did try to help. This exchange is like when your cat brings you a dead mouse: “thank you, but ew”.
This convo is likely to be full of teaching opportunities. Some good responses might be “hmm, that doesn’t really sound like endometriosis, could it have been something with a similar name? Endometriosis is [insert accurate definition here]” Another could be “I’m really glad that method helped her. That may work for some people, but when it comes to endo, everybody has a different “magic formula” of occurrences that need to happen to feel better and while I have tried many things, I haven’t found what works for me yet”.
When people make insensitive comments and ask toddler-level-ignorant questions, try (when you can) to see these as chances to open someone’s eyes to a world in which they have not had to live. For yourself and for other sufferers, open their eyes to the deeper struggles and problems that are faced. Use these comments as springboards for conversation and to direct them to good information like the info at www.endofendoproject.org. Try to see these encounters as blessings instead of burdens.
What other repetitive comments do people make that stem from ignorance? How can you change these encounters from eye-rolling to world-changing?