My heart sank.

I just told someone that I wasn’t getting the services I need, and they explained the problem away, as if I wasn’t important. Everyone else in the room just sat there, either silently or nodding their heads.

This is only one in many instances where my needs have been explained away.

A lot of times I ask for services that have been promised to me, and then the staff person never shows up or just keeps postponing everything. So I have to take the bull by the horns and do it myself– filling out forms, doing tasks I need but can’t get help with, etc. One time, I was called a liar for taking initiative on a form that the staff person literally told me to start alone because no one would help me. I’ve been gaslit so many times!

Let’s start on doctors. First of all, some of them are fantastic. Most of them–in my experience with rare conditions–are not.

2 years ago I begged to be tested for endometriosis, and medical professional after medical professional flat out refused until I TOLD one that they were GOING TO CHECK. Of course I had it, and it probably triggered my Chronic fatigue syndrome.

I have also had to convince my doctors that I have chronic fatigue syndrome and autism, and each of those diagnoses open the door to real help and/or real understanding that I had to live without for years.

Why do I need help? Why do I need understanding? I seem pretty functional on paper, right? I teach piano, I write blogs, I go to church, I take care of my pets.

But did you know that when I decide to do a craft fair like I did last weekend, I know I will be overdoing it and I’ll have to miss something later (small group this time) to avoid getting sick? Chronic fatigue syndrome doesn’t let you have a break. If you overdo it, you pay.

Or did you know that I can hardly get out of bed in the morning? I usually lay in bed for at least an hour before I can drag myself up. And let’s be real, it’s usually my overactive bladder or my IBS that actually gets me out of bed–pelvic floor dysfunction is so fun. Anyway, sometimes depression has made it so hard to get up in the morning that I wear my clothes overnight because I don’t have the energy to get dressed.

Or did you know that sometimes after doing house chores for 15 minutes I need a break or I feel yucky, or that walking up my stairs makes me out of breath with hot flashes, or that I feel too embarrassed to tell people that they’re walking too fast for me even though I’m getting tired and winded?

So that’s why I need help. And understanding. And that’s why, if you EVER ever ever get a chance to stand up for a person with a disability, PLEASE do it. It’s exhausting to do it myself most of the time, and yet, it’s my life. And I know that my life will always be hard.

I’ve accomplished more now, when it looks like I’m doing nothing, than I did when I was performing in recitals and getting a triple major and being accepted into grad school.

What have I accomplished now, you genuinely wonder. Yeah, I would wonder too.

Well, I get out of bed everyday.

I haven’t hurt myself in 4 months. My record is 7 months, and I’m going to beat that.

I still pray and go to church, even though I don’t understand God and suffering and pain. I’m trying to draw near to Him still.

I find reasons to enjoy some of life. My pets help a lot. So does color and glitter and sparkles and art and piano and poetry and coffee shops and friends and family. So please keep being there for me, those of you who know. You help life not be all bad.

I hope this gives you a glimpse into someone’s world with an exhausting set of disabilities. Always ask first, and then always offer a helping hand and words.

Thanks for reading.