Please, Tell Me Again How I’m NOT Disabled
Multiple Sclerosis is frustrating in so many different ways; both physically and emotionally. Many of us diagnosed with this disease cannot do the things we once could and can no longer pursue the life we once wanted. That is a horrible emotional set of pain in and of itself. It gets even more frustrating. Many of us cannot communicate to our friends and family what it is like to live with MS. It can be a rather invisible disease; can you see how I can’t see? How my nerves are on fire? How I can’t think or how I feel so exhausted for no reason at all? No, I didn’t think so. In the middle of one of my worst relapses ever I can sit at a table across from you, sip some coffee and talk about politics yet you would never guess there was anything wrong with me! I look just fine! I look healthy even though I feel like crap. This is a major issue for people with MS and is the number one cause of my emotional distress. I hate admitting it but yes, I am disabled, definitely not as bad as others, but by definition, I still am and this disability makes life so difficult.
As if that was not bad enough it still gets more frustrating! I mentioned that many of us cannot communicate what living with MS is really like to our friends and family. I can be really good with words and still I find at times that I just want to collapse and shout at the top of my lungs when I try to explain how I feel, how I feel when I do not even fully understand myself! But I have learned to let go of that to avoid the stress of growing frustrated. Some people get it and some people do not. People are not born with empathy, it is a skill that must be learned and mastered. In order to feel true sympathy you must have gone through something so similar that you can honestly know in your heart how someone feels. Not many people in day to day life know how to be empathetic or sympathetic so I just let it go. It is not that easy but it is that simple. Here is the problem; your friends and family? They are not the only ones you have to explain how you feel to are they?
The legal system. Well, the Social Security Administration in particular. My “favorite” least-administrating administration in the US of A... Sorry, I have to be careful here, I am trying to not let my anger hinder my ability to be objective. You see I don’t want to say “the SSA is a broken system that doesn’t really do anything to help a good majority of people living with MS maintain some sort of quality of life making a lot of us wish we never even had anything to do with them in the first place” because that would describe them perfectly. No I can’t say that because though it is a far from perfect system it has in fact helped people with MS. Here is the frustrating part. Knowing you are disabled, knowing you want to work but can’t because of your disability and being told you are not disabled. “You look fine to me so go get a job you moocher”. Yes, I get it, I have “Relapsing Remitting Multiple Sclerosis” and when you type that into your fancy government computer it gets all confused and denies people for benefits because if you have a relapsing remitting disease than obviously you are not disabled all the time but only part of the time. So obviously you can work when you are not relapsing! But how realistic is it to think you can hold down a career, a job, when every few days, weeks or months you need some time off because your symptoms are flaring? Oh yeah, since when did relapsing remitting mean when you are “in remission” you have zero symptoms? At my best I still feel like crap!
I really do want independence. I reallydo just want to be another contributing member of society who blends in with the crowd but that is not the hand I was dealt. After 5 years of living with this disease I still have no idea how to really explain to people or the government that I can’t do as much as I look like I can. I wish I turned green depending on how ill I was because people believe what they see and maybe then it would be easier for people to understand and not treat me like I am full of crap just looking for a hand out. I would love some empathy, even some sympathy, but I never want pity. Not ever. I may not look disabled nor do I like to consider myself disabled but don’t try to hide the fact that I am expected to climb the mountain we call life just as easily (with 200 extra pounds on my back) as everyone else because that is just not realistic. Unless you have walked a mile in my shoes don’t tell me “you are fine”.
Do you celebrate your MS Anniversary?