As a person with Devic's Syndrome, a rare illness similar to Multiple Sclerosis, there are numerous difficulties that plague my life. First and foremost there is the physical repercussions that I endure from having this disease. The second is the financial strain it puts on my family. I lost count of the number of times we had to re-modify our mortgage so we wouldn't lose our home. Borrowing money from our relatives left a sour feeling of shame and worthlessness. The unrelenting struggle to keep afloat wears on us emotionally and sometimes the stress is heavy enough that we buckle from the sheer weight of it. Which brings me to my next topic.
When I was diagnosed they thought I had Multiple Sclerosis and was treated accordingly. Yet after many tests, doctor visits, hospitalizations, and studies my diagnosis was tweeked to Atypical MS/Neuromyelitis Optica. A mouth full, I know. It's also known more simply as Devic's Syndrome. I was a lab rat being studied like some interesting oddity. That's alright though because my personality is to always meet an obstacle head on and keep pushing forward. Along with my impenetrable persistence and a team of top doctors I finally had my answer.
I knew Devic's was rare and therefore I would be a bit more isolated. I never did fit into that little golden box labeled "normal" by society. What I honestly never expected was to be turned away by a few MS support groups on Facebook. Apparently, I didn't fit into their "guidelines" also. They told me what I had wasn't normal MS. I pose this question: What, if anything, is normal about MS? I assume this is due to neurologists still debating whether Devic's Syndrome is a form of MS or not. Diseases isolate people enough let being further rejected. It's not like I was a cancer patient looking to join an MS group! Basically, I have been a victim of disease discrimination! I never even knew that such a thing existed. I realize there's a law protecting the disabled but there's no law against people with diseases discriminating their own kind. Has mankind become this petty? Aren't other prejudices, such as race, color, and religion enough to separate us?
Though out history at least one common thread has been repeated and this is up to individual opinion whether it's a negative effect or a positive one. A common enemy unites people like nothing else. Usually this enemy threatens physical and/or psychological harm. It was my understanding that MS and it's variants would unite people like myself; MS being the common enemy to my kind but maybe I was a tad naive. As you can tell this has left a sour taste in my mouth that, like with all wounds, will heal with time. I do refuse, however, to let the ignorance of a few demolish my faith that they are still genuinely kind individuals in our world.
Dealing with a chronic illness or any other type of an extremely stressful situation does leave behind emotional scars. Some of this scars just do go into hibernation. They continually cause mental suffering on a daily basis. This is true for me. Lately, my emotional scars have decided to play a riveting game of "let's screw with her feeling daily." On a daily basis I experience at least one anxiety/panic attach. And for any of those people out there reading this has had them then they know this just is not a fun game at all. It's fucking horrible. I have to laugh a bit about it though because the whole time I was going through a tornado of doctors, medications, tests, and awful flare-ups I handled it very well emotionally. Now that the waves have stopped crashing and soothed down, that is when my mind decides to go into panic mode. I always thought I have a knack for doing things ass backwards but this one takes the cake.
So many, many people everywhere deal with emotional issues such as depression, maniac behavior, bi-polar, anxiety, and so on. It is an every day battle dealing with those thoughts that just screw up our way of thinking and acting. You even tell yourself to snap out of it but that never works. A lot of people see mental disorders as not a real type of illness because it's all in our heads. Well, guess what? My Devic's Syndrome can't be seen on the outside so is that all in my head too? Mental disorders are far too real and far too dangerous to be left untreated. Now I am not saying medication for mental disorders is a cure all and should be given away like Tic-Tacs. It takes a combination of maybe some medicine, therapy, and daily exercises to re-train your way of thinking. I always said it takes a lot more work to change a frame of mind than the frame of your body.
So many of us suffer silently out of shame. But being in complete solitude with our mental illness just makes it worse. We need to start supporting people more with mental disorders. We need to try to understand them better. It's easier to do this if you have gone or are going through it yourself but it is very hard for someone who never had a mental disorder to try to grasp the reality of it. If you know anyone in your own life who shows some signs of something like this please be there for them and try to help them find the help they need. Just one act of kindness could change someone's whole world. You may not be the person who changes the world but you will always be the person who changed that one person's whole world. And that is something glorious!
Out of some random curiosity I decided I would do some numbers research on Devic's Syndrome. What I found out nearly made my jaw hit the floor. Only 1-2 per 100,000 people world wide has Devic's Syndrome. Now if my math is correct, which it might not be because I suck in math, that means there are only about 10,000 people in the world that has this disease and I am one of them. 10,000 people out of a world wide population of 7.046 billion. What the hell?! I knew this disease was rare but I never imagined this rare. I can't even try to put that into a percentage because my math skills are very limited.
Now let's compare Devic's to its sister disease which is Multiple Sclerosis. Currently there are about 250,000-350,000 people world wide with MS. Plus, studies suggests that 200 new cases are diagnosed each week. Wow! I don't know whether to feel frightened or special. I always liked to stand out from the crowd but I think in this particular situation I would be O.K. with fitting in. I went on this site, myelitis.org, that seems to have a lot of information on Devic's. I happened to stumble across a paragraph of listing symptoms of its flare-ups. I think I made the news and didn't even know it. The site said, in rare cases, persistent hiccupping and vomiting can result from a flare-up. When I had this no medical profession, including my world renowned neurologist, ever heard of this flare-up. Well, let me give my neurologist his credit, he did figure it out way quicker than any other doctor. So I believe somehow I made headlines. Not only do I have a rare disease I also had an even more flare-up from this rare disease. I guess I really do like to make a statement.
I am still surprised, even after all this time, whenever I tell a person including medical professionals what I have I always get the confused look. This follows with the normal question of, "What is that?" I start to explain but then find it way easier to just say it kind of like MS then they usually get it. This reaction does not upset or anger me in the least. I find it a golden opportunity to make more people aware of it. If I can bring more attention to it then maybe it will get more research and fundraising efforts for treatments and maybe even a cure. I throw that notion around my head quite a bit of how I can bring more attention to this illness. A fundraiser? A benefit? Hell, a freakin billboard maybe. Well, if you have any ideas please feel free to comment. I could use them. Pass along my website and maybe that will be a start. Word of mouth.
Here's a YouTube video I found explaining the science behind the disease.