Your Thoughts on Disability

I feel like this is going to be a hot topic, but really wanted to ask the Lyme community, or anyone really, their thoughts the subject of disability. And I don’t mean to offend anyone here, but I like to tell it exactly how I see it. I am just really curious about the topic with Lyme patients, as researching online about this topic, it seems really wishy washy, and the CDC and government don’t acknowledge Lyme disease as chronic.

When DC first called to plan to set up my IV’s, they suggested myself looking into seeing if I could go on disability. I told them that’s not going to happen. I am going to work. Work, as bad as I am at it, it keeps me sane. It gets me out of my house that has now somewhat become a prison, even though it is the most comfortable place and I would rather be plunked on the couch at the moment then off on any sort of adventure.

Now, I am not going to judge each and every one that chooses this path. I do, however, feel like some people have a tendency to not “mind over matter” things and give into all the bad when they choose to go the path of going on disability or give into being the “sick” one. There are some, obviously, that really need it, like they can’t walk because there are too many idiot doctors that probably misdiagnosed them for years and years and have to be in a wheelchair 24/7.

I am reiterating, not saying everyone, but there is some for sure. I am going to be blunt on this one; I feel like some people almost in a way, enjoy being sick. Well, no one enjoys being sick, but I feel like it is a sense of some people’s identity. Like they wouldn’t know what to do with themselves if they weren’t sick or hurting. Too many people in this world see themselves as victims, and not as fighters. Handicapped, disabled, working, whatever situation…. be a fighter. NEVER be a victim. You are choosing your own path that way.

I don’t even have a handicap sticker for my car. I know I could easily get one. Dave and I have discussed it, and I know it would help a lot at least parking at the hospital, but it’s really hard to grasp being that sick.  I am doing better now than I was 6 months ago, in a lot of ways, and I know it could and would have been useful. Sometimes Dave would have to smack me in the face to get me to “be there”, I use to and still do need a wheelchair for long trips, even some shorter ones, and so much more, and never did I see myself in that way at all.

I don’t like to be the “sick girl”, nor do I identify myself in this way.  I have too much pride. Instead of asking for help, I will struggle and do it myself. That is me. That’s always been me. I have always had the chance to take an easier route, but I have been raised to be independent. Get help from my parents and eat steak dinners and not have two jobs , or work my friggin ass off and eat tuna fish sandwiches and ramen noodles….. I chose to work hard.

Like I said in the beginning of my post, I know this is probably a hot topic for some. Maybe even offensive, which I in no way mean to be. Even people that don’t have Lyme that are on some sort of disability. I guess this applies to all on their thoughts of disability in general.  It’s not going to change my mind on this one in my case, unless the Hubs forces me to get a parking sticker, but I am gritting my teeth even at that one. I walk like I shit my pants, have seizures if I overdo it, among many other debilitating things I just can’t make myself out to even ask. Can’t do it.

What do you think? Is anyone with Lyme on disability, and why? Did you have to fight for it? Parking sticker? Was there a time limit? Thoughts in general?

5 thoughts on “Your Thoughts on Disability

  1. i didn’t have a choice – not that i have been approved yet – i was forced to take a medical retirement (in more ways than 1 but that is another story) b/c i thought i was losing my mind….. at the time in 2011 had no clue it was Lyme.

    lost my house (in some dream world i thought SSD would come faster) – and eventually got to the point where i don’t drive much b/c of vision….. and the fatigue and brain fog eventually stopped my post retirement side gig of Pure Romance parties.

    no family support – and without SSD I don’t stand a chance in hell of getting well. And I don’t know if the back issues will ever go away (thank you bugs for 3 inches of height loss in 4 years, a cracked vertebrae, etc)…

    I worked from teh time i was 16 til i was 41 – including full-time and college through the Master’s Degree – so my theory is i earned it – i just want what due me so that i can get back to being a functioning member of society. Trust me – our state got lots of grant $$ b/c of me – and I’d like to get well and use that knowledge and skills to help Lymies in the future….if i get well.

    i am a totally different person now. But before….
     Actively gardened & maintained 5 acre & home from 1998-2010, which I subsequently lost to foreclosure after the huge pay cut from the medical retirement.
     Love animals & kids. Pets always & active involvement with kid’ activities until 2011 (niece/nephew, friends’ kids, etc.)
     Social butterfly until 2011
     2010 – Began “Hot Yoga” (Vinyasa) – loved it & was in best health of my life; continued through retirement, after which I could no longer afford it. I still do some poses to stretch out when able. I actually think it helped me “detox” from the MTHFR genetic issue (DX in b/c Hot Yoga = dripping sweat.

    anyway – saw no one had commented so thought i’d toss in my two cents worth

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