u/nerdychic

I’m just looking for help putting these things into words that people will actually read. I’ve always been bad at explaining my feelings and experiences, but it’s even harder when you’re in awful pain and have brain fog. I’m just looking for something to sum this up so I can post it to Facebook, because my friends and family don’t know how bad it is. I think it’s time they knew. To clarify, it’s my fault they don’t know. I hide because it distresses people, and I absolutely loath being pitied. Here are the main points Id like to make. Im ok with it being in list form like I have here if you want. Thank you so so much in advance. This is life changing for me and I appreciate it. By the way I realize a lot of this is going to come off as whining. I hate whining (which is why nobody knows just how sick I am lol). So I’d appreciate if we could make it not sound like I’m complaining. I guess it should read more like a confession or an educational pamphlet. My main issue is keeping it engaging. Again, thanks in advance for the help

1. I’ve lost EVERYTHING because of FND: every single one of my friends, my dreams, my career, my independence, hobbies, everything. People are helpful at first but when they realize how bad you are and that you’re not going to recover, they fade away.

2. Every single day I’m in indescribable full-body pain. Every muscle. Every joint. The pain is so severe that if the average person woke up feeling like this they’d call 911. There is no escape from it, and it’s 24/7/365. It’s literal torture.

3. I hide how sick I am because it upsets people, or makes them feel awkward. I’ve learned how to seem ok and smile, even when I’m in too much pain to stand up. I also hide how sick I am because hearing people pity me is crushing. I know it comes from a good place of empathy, but I don’t want to feel pathetic. I want to feel strong, and be encouraged.

4. It’s very very lonely when you’re ill. It’s even worse if you’re too weak and in pain to leave the house for weeks. Everyone thinks someone else is taking care of you. But they aren’t.

5. I’ve been so traumatized by healthcare workers, I get nervous just seeing an ambulance. If I told you the things they have done to me, you wouldn’t believe it. I’m glad Shawn has witnessed most of it so I can prove it. Here’s one example: the first time I had a seizure I didn’t know what was happening to me and I was terrified. The EMTs screamed at me the whole way to the hospital for “faking it and wasting their time” (because they didn’t know what a functional seizure was). When yelling at me didn’t make the seizure stop, they made fun of me. I was powerless to defend myself because of the seizures. I am also accused of drug seeking at least twice a year, because the pain is so bad I have to ask for stronger and stronger medications.

6. I have several seizures a week. They are non-epileptic which means they don’t involve the brain, which is good. The bad thing is they can go on for hours sometimes. The bad ones are very painful, and can easily cause pulled muscles. These seizures are alway exhausting, no matter how short or long they are.