I am one of those people who is okay with being able to talk about MdDS. I don't do it for attention, but for awareness on a disorder that is so misunderstood that there are even doctors out there saying that it doesn't exist. Its hard to be a person who looks well on the outside, but has all of this internal struggle going on on the inside.
I push for awareness. I speak up and try to explain it the best of my ability. Even when I am symptom-free, I still speak up and talk about it.
Unfortunately there are people out there who are unable to speak up like I can. Because of their jobs, or worse, having no support and people not believing that this condition is even possible.
Here are some problems we MdDSers have that I have found across the board:
1. We can't just act "normal." In fact, for most, this is our new normal.
2. We can't pretend it doesn't affect us. Actually, trying to do this causes us more stress and then worsens symptoms.
3. Its not "all in your head." Well, technically it is, but not how you think. This is an issue with the inner ear, vision and brain. So yes, it is all in our heads, but we aren't making it up or acting just to get attention.
4. Remission does exist. Yes, there are a lucky few (I being one of them) that have had periods of remission, but for a lot of those people the symptoms do eventually return, sometimes worse than the original onset.
5. I apologize in advance for forgetting you invited me to a party, or I forgot to pick up a certain item from the store, or I ask you to repeat something over to me because it takes me three or four times of you telling me the same thing to remember what you said. Its called Brain Fog, and it really does exist.
6. Don't mind me, I'm just having a panic attack in the middle of the mall with no escape because the crowds are moving too fast and the lights in the windows are blinking and I can't focus on what is happening around me.
7. Yes, I've talked to a doctor. No, they can't help. The meds give symptoms I would much rather not deal with. Rehab treatments can only go so far.
8. Yes, I'm frustrated. Yes, I'm crying again. Yes, I'm shocked as well that I don't have a bald spot from wanting to rip out my hair with this.
9. No its not vertigo. Vertigo is a broad term for motion disorders, however it includes spinning. MdDS is a rocking motion, a distortion of vision in some cases, a constant feeling of motion sickness and much more.
Here's the thing, MdDS is a disorder that is so insane that the sufferers are doing more research than the medical field. We talk with each other, post out possibilities and approach those few physicians who do believe us with ideas to try and see if they help. We are finding connections with each other such as cardio issues, or migraine sufferers, from triggers to treatments. We throw out what meds have helped and what hasn't. The thing is, what helps out a few, doesn't for most.
Its an every day struggle and even for those of us who have had the joy of remission, even if was for a few weeks or months, we continue to support each other because we never know when it will return, or if it will return.
So what do I ask for?
Understanding. I've been fortunate enough to get that understanding from my family, my friends, my co-workers, my fellow MdDSers. But I'm one of the lucky ones.
Answers. Why does this happen and how can we make it stop happening so no one else ever has to deal with this disorder.
Support. So many people just need someone to say "I've got your back" "You're not alone" "We are going to get through this"
I leave on this note. MdDS is an internal struggle for every sufferer. Its not just about the adjusting, its about coping and fighting yourself internally to figure out what the hell is going on with your own body. Its a matter of having been an independent person to relying on those around you even for the most mundane tasks. To fight your pride and ask for even the slightest bit of help. An internal struggle to be okay with cards you were dealt with so that you can fight to live each day as best you can.
~Sara
