Be careful who you judge. Be careful how you judge. Tides always turn.
Dear Other Healthy People,
I live with a mixed bag of autoimmune diseases, and have for many decades. They are what we “spoonies” call “invisible illnesses.” In other words, most often we look just fine on the outside, but we feel like holy hell most of the time. Because of this, people like me are misunderstood a lot. We lose relationships because of it even. We are thought to be lazy, disingenuous, feigning, or just outright lying about our symptoms and how shitty we feel. We are thought to “use” our diagnoses to get out of social situations or work and chores. It’s hard to even get physicians and other healthcare personnel to take us seriously, and more often than not, it takes many years to even get a diagnosis because of it. So the lack of understanding, empathy, knowledge, and just general trust from loved ones and healthcare personnel is not only extremely frustrating, it’s also dangerous.
Please don’t tell me you understand when you clearly do not, and let’s be honest, cannot. If you think it makes you mad when I tell you not to say this, imagine how angry it make ME when YOU say it! There isn’t much more aggravating than someone who tells me they understand, then turns around and is a perfect example of someone who clearly does not. Just don’t say it. If you feel like you need to say something, search your heart first, or just don’t say anything at all.
If you love someone with an invisible illness, then love them just as they are. It isn’t going to change. It isn’t going to go away. This is what you have. This is what we have. We may have good days, and we may be fortunate enough to go even very long periods feeling great! But don’t be a toxic cloud when we don’t feel good and we aren’t able to accomplish all that we’d like, or maybe even all that we’d promised. We are already tired of feeling guilty about what we have no control over. Believe me, no one — NO ONE — beats themselves up more about not being able to do all that they want to do more than we do. NO ONE! So we surely don’t need you spreading your nasty little comments and attitude around as well. That serves nothing but your own ego about how much greater you must be, and how angry you obviously are that things are the way they are. Thanks for absolutely nothing.
Have you ever thought about how hard it is to be a healthy, active, strong person one day, and then not be able to move the next, be in constant pain, and then have that rarely ever change? In our heads, we are still those healthy, vibrant people — just dying to get out and be who we really are. It’s a cruel joke. It’s physically and emotionally painful. So take your disdainful looks, your snide comments, and your whispers behind our backs, and shove ’em! And now pray that you don’t end up like this, because God knows that many of us have prayed for you to end up just like this so you can know, if even for a day, what this is like — to be stuck in a body that refuses to cooperate, that is at war with itself, that inflicts constant pain and confusion, organ failures, threatened with early demise, and refuses to ever be replenished by any amount of rest and sleep. I won’t even get into the horrible medications and treatments we must face.
None of this is to have anyone feel sorry for me or the rest of us. It’s simply to say, “Get a grip!” to the rest of you. Either be all in with us, or get the hell out. Seriously. This is exactly how I feel. We have enough to deal with to try to stay above ground and have a smile every day without having to deal with people that don’t even deserve to be in our lives in the first place. So now you can’t say you don’t know.
If you have a relationship with me, the truth is you don’t know what you’re going to get from day to day, and even hour to hour. I’m sorry, and I mean that. It’s hard, and I know it. I also know I’m worth it, and so are the few who have stuck with me.
Oh… I almost forgot. We don’t expect you to understand it all. Just believe us and love us anyway.
Yours with Tenacity,