It seems obvious, but half of the terrible things you go through as someone with a chronic disease are caused by other people.
And that’s sad.
One should not have to prove their pain, and yet, most of us with chronic disease have had to explain our pain to disbelieving ears. It’s like everyone wants to believe we just have a tickle in our throat or a piece of toilet paper stuck to our shoe. That or they think we’re making it up. The latter is worse. It means they think we’re doing it for attention or that we have completely lost our minds.
I did lose my mind, but it was because I felt like I had a bladder infection 24-7, with some shards of glass sloshing around on my innards, thrown in on the side. Interstitial Cystitis is Chinese water torture on your nether regions. It’s the Guantanamo Bay of diseases and you’re not sure it will ever close, especially with Trump as president.
So, you’re in this ridiculous amount of pain and are peeing like a toy poodle, frequently and everywhere, and then you find out someone thinks you are happy about it. I seethe.
I know most of my posts are encouraging and upbeat, but I feel like I need to defend my community of chronic illness peeps on this one. Just because a disease is not well understood doesn’t mean it isn’t real.
Listen, your friend wishes on every candle, on every birthday cake they have ever had, that it would go away and they wouldn’t have to explain the malfunctioning of their body to another human soul.
So puhlease- give the freaking disease the respect it deserves by not assuming it is made up. I think of IC like a bad guy in a movie whose ego has been crushed… he’s just going to get pissed and wreak more havoc if you tell him he’s not that bad. Tell him he’s big, bad and terrible and then walk away…slowly. Otherwise, you’re just asking for trouble.
Also, while we’re ranting, let’s talk about how good we look. I mean, when we have lava burning in our undies and are in tears and then someone says, “but you look awesome”. I. Just. Can’t. But I will…
So glad my lipstick was money the day you saw me, but it doesn’t mean the pain is not real. I am rarely in pain these days. Thank-you, Jesus, Mary, and Joseph…the Holy Ghost, and every saint that has ever lived, cross my heart thirty times, all the things you say on the rosary, amen! I would say I am in remission even, but I need to say a word for those good looking spoonies out there: don’t tell someone with a chronic disease how great they look.
Just tell them that you love them. Tell them that you will walk the road with them, wherever it may lead. Tell them it’s ok if they stop spinning all the plates for a while. Tell them you know the pain is real but you will help them find an end to it and you’ll be there all the while. Read them a book. Sing them a song. Give them a hug. Bring them an icepack, and mostly just believe them.
I am so thankful to those that did that for me, and continue to cheer me on; who know that this blog is my attempt to give back to those whose steps I have walked before and who know I write this for them, not for me.
To those of you that are in pain and are misunderstood, I’m with you tonight, brothers and sisters. Your pain is real. Your disease, real. And your lipstick…reeeeeeal nice. Hang in there. I am proof that sometimes it gets better.
Who has supported you and understood your pain as real? Who hasn’t? Tell me about your own experience in the comments.