this is a touchy subject. i dont think anyone likes chronic illness....i cannot fathom anyone loving thier disease.
i had mentioned, in a previous post, about how some people with MS piss me off. And, I am now gonna bring up a fellow MSers blog post about people that one-up with their chronic illness. she refers to them as the 'out sick you' person.
i suppose i can weave my words and try to tackle them both simultalneously.....
as far as a one-upper....there are some people that have it way worse...waaaaay fucking worse. I have been reading on this chicks MS blog about her feeding tube, and that she can no longer speak cos MS stole her voice and the ability to swallow. Cripes. that blows, big time. Now...here is my question. if someone else with MS doesnt have THOSE symptoms, or even symptoms as bad as that....is this lady an out sick you person? or, does she just have it worse than you? I am going with the latter here. facts are facts. now being able to swallow or talk is WAY fucking worse than having a tingling lip, or some spasticity.
that kinda touches on both...but to elaborate on why I get pissed at some MSers, I am gonna explain it with some personal experiences.
*I have never been an extremely social animal, ever. I have always had few close friends, a couple aquaintances, and been close to select family throughout my lifetime on this planet. When I became a cripple, I was encouraged to reach out to others with MS online. Perhaps relating to them, building friendshipsm supportm etc....so, i did........
I had been open online about being in a wheelchair, and being pretty pissed off about it. One MSer, had recently become diagnosed. He is in his early 30s. He went through some shit early, was in remission, had ZERO mobility issues. He started to tell me how he was immediately going to the SS offce to fillfor SSD. At this point, all wheelchair bound, I hadnt even filed for it. He was angry with the diagnosis, claimed his life was over, quit his job, moved in with family, and sat in a room all day, depressed. No mobility issues to speak of, none. So....i unfriended him.
Call me intolerant, unsympathetic....but i thought he was fucking pathetic. and I cannot tolerate that shit.
(a quick disclaimer or whatever....i dont want anyone getting the wrong impression of me right out of the gate. I am wildly misunderstood, as i am not the best communticator. I am not jealous or bitter of anyone elses mobility. i am not in a constant state of pity. I am not, as a whole, negative. I just really have a problem with MSers that ADMITTEDLY have no mobility issues, and whine to MSers in wheelchairs about how shitty their life is. thats all.)
then, i met chick online with MS. she is in her 20s. we had a few things in common outside of MS, which was neat. So, we actually spent a lot of time exchanging emails about the shit were were mutually interested in. Recipies, dogs, music, movies, etc. Eventually, we got down to the nitty gritty...and started to dish out our MS shit. What sparked it was that she had posted about feeling down/depressed bcause she had to call into work, missed work because of her MS. It was affecting her life, and she was sick of it. she hated this disease, etc. I felt bad for her. i felt for her. so, i send off and email. I decide to open up. besides my own generic symptom list, i decided to reallllly open up. Get into some of my personal fears, issues, how i was dealing with disabiltiy, etc.
a couple days later, i get her email. she thanks me for being so open. and she gets me. she understands. TOTALLY. (i am feeling really good, happy...warm) then, i continue reading....she goes on to say that her lip had been tigling, driving her 'nuts', and thats why she had to miss work. (...huh?!) then, she goes into detail about how she knows exactly where i am coming from because her fatigue and MS were soooo bad that she was only able to take a 30 mile bike ride, as opposed to her normal 35 milke bike ride. She also complained about wanting to trade her vehicle in, becuase the one she was driving was 2 years old....(i am reading this shit, thinking seriously???)
so....maybe i am an intolerant asshole.....but i unfriended her as well.
i have been perusing MS blogs for years....trying to find people to relate to. I admit, i have read some MSers blogs and cried like a small child. I have read some and been inspired. I have read some and gained insight.
and, i have read some, and thought "you pathetic bastard/bitch". but hey, thats me.
i suppose people could easily read my blog and think, 'this bitch is angry cos she is cripple, so she doesnt have sympathy for my MS cos I can still walk'. well, yeah, kind of. i wouldnt be angry because you can walk and i cant. no. i would be angry because you can walk and are whining about it. big deal your lip tingles. my opinion. and NOT everyone diagnosed with MSwill end up in a wheelchair. Not everyone with MS has the same symptoms. I am in a wheelchair, numb, in pain everyday....but, an MS friend of mine has no pain, but is in a wheelchair. but she has trouble with her arms, i do not. but when i laugh or cry with her about my lack of mobility, she never thinks i am trying to out sick her, nor does she think that i am diminishing her symptoms. and, vice versa.
I spoke to a very dear friend last week. She does not have MS. She is 100% legit chronic illness free. She will sometimes bitch for 5 minutes about her road rage because of slow/careless drivers, how she was late for work, or had to grocery shop, or played softball. she makes me laugh like a fool. then, its my turn to bitch. and, we still relate. I have no problems with illness free people bitching about stuff. so why, oh why, do people with MS that have mobility drive me up the wall???
maybe it is because of who i am, and how i lived/live since diagnosis in 2000. I never stopped until MS took my legs...then, I stopped for a year (in the throes of depression) and then, found a new mode of transportation and keep going. No matter how small my life is. I just really cannot understand how some people get diagnosed, and then they act as though life is over. I admit, its scary. yes, i get that. but to quit your job??? ( when you are able to work??) to complain to fellow MSers about running your 15k???? (when they are crippled)
ok, i am done with this. hopefully, i have some clarity in there....because i am not an asshole, well, not a TOTAL asshole, anyway.
No comments:
Post a Comment