What's the biggest hurdle you have with your disability (ies)

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  1. Siren
    Siren
    For me the biggest hurdle is getting people to understand my disease. No one knows what Lyme disease is, especially chronic Lyme disease. Some people know that you get it from being bitten by a tick and that's a huge bit of information in my book. Most people don't know that chronic Lyme even exists or the huge fight between the government and the insurance companies about paying for chronic Lyme patient care or that LLMDs are losing their liscense's for treating chronic Lyme patients and there only a hand full of LLMDs across the country and you may very well have to travel hours to see one.

    Lyme patients many times have co-infections that they got from the tick that gave them Lyme that need treatment also. I got rocky mountain spotted fever, Babesia and Bartonella. Insurance many times doesn't pay for testing for Lyme if you weren't recently bitten or were bitten in the past and are asking to be retested for chronic Lyme.

    Infectious disease doctors believe once you have been treated once you are cured and there is no such thing as chronic Lyme although there are thousands of cases of it.

    Your general practicioner will not work with your LLMD for fear of losing their liscense.

    The hospital ER does not recognize chronic Lyme so if a chronic Lyme patient goes to an ER with a relapse they may get steroids which could worsen their condition.

    Most LLMDs don't have hospital priveledges.

    In general, if you are a chronic Lyme patient you are screwed.
  2. Blue
    Blue
    For me it's not being able to drive my truck - legally, unless I do so as a private vehicle - and that's very expensive. Most understand at least the basics of diabetes. Anything else well, that's pretty much abuse related and I don't expect "normals" to understand that stuff.
  3. Blue
    Blue
    For me it's not being able to drive my truck - legally, unless I do so as a private vehicle - and that's very expensive. Most understand at least the basics of diabetes. Anything else well, that's pretty much abuse related and I don't expect "normals" to understand that stuff.
  4. JuliePurple
    JuliePurple
    Siren, I have to admit I did not know anything about chronic lyme disease until I met you. I have researched it quite a bit since to better be able to understand what you go through. For me the hardest thing is that my disability doesn't show. Well not all the way. You can see by the way I move that I'm in constant pain, but you can't see what is causing the pain, therefore making people stare at me because I walk slow & different and they don't know why. Also a huge hurdle for me is it being hard to plan anything due to fact that I don't know if that certain day is going to be a day I can get up and move around or a day that I'll be in so much pain that I'm confined to bed/couch. I've had to cancel so many things on so many people that I struggle with even making plans ahead of time. Most of my good friends understand when I have to cancel but there are alot of people who don't.
  5. Marley
    fluctuations and inconsistencies which people don't understand that because I could once do it, I can't today and I don't know if or when I will. social life is non existant.
    access is also a huge issue, uneven paths, no ramps, steps and hills all are a nightmare for a wheelchair.
    the financial costs and losses. the cost of equipment, drs. therapy and taxi cabs.
    but the biggest thing is the lack of acceptance from family. what will people think if we park in a disabled parking bay? If we didn't accept limitations (we don't easily) then we will get better, not worse...
    feeling like life revolves around medication, drs appointments and hoping for a functional hour or two each day.
    accepting imitations and not qualifying for subsidised help because there are others more in need, or being passed from one agency to the next because it is always some other service and it becomes cyclic but no help.

    Marley
  6. Specialone
    For us it's gettin people 2 leave me the hel alone n stop either starin like av jus landed from marse, tryin 2 make owt am helpless or stop em thinkin am a flippin science experiment, blood bank or somet. Makes me angry! :(

    Teen
  7. VictorianRoses
    VictorianRoses
    Hi I am new to this group. I hesitated joining it because I don't really have a name for my disability. I have been having pain and fatigue ever since I had a total hysterectomy and surgery to remove endometriosis several years ago. I am still in search of finding what is wrong. Because I didn't have money to pay insurance for a very long time, and was wiped out financially by my surgeries (I had 3 for endometriosis) I didn't have money to see a doctor about these problems. That has been one of the worst hurdles for me. I could not get on disability either because of numerous reasons. Somehow I gained enough strength to go back to work, so now I have more money to reach around so I can see the doctor. I work eat and sleep and have no energy for anything else. I come to work, go home at 5, eat dinner, write a little on fort and go straight to bed most evenings. I just changed family doctors because my family doctor I had got frustrated with all my ailments. I am hoping this one will be able to help me find some help. So yeah theres more than one hurdle here.
  8. VictorianRoses
    VictorianRoses
    Hey Marley, I can so relate to this-

    fluctuations and inconsistencies which people don't understand that because I could once do it, I can't today and I don't know if or when I will.
  9. VictorianRoses
    VictorianRoses
    Specialone, that is cruel and very inconsiderate what people do, and I feel for you.
  10. Ananiujitha
    Ananiujitha
    I don't know.

    I have sensory issues, so part of it is incapacitating pain from sensory bombardment, and the pervasiveness of the bombardment. Even wearing 57 nrr of protection, if I'm hit by backup beepers, then I'll have to curl up in pain. I can't use public transportation, because it's too loud and because there are flashing lights. I can't bike any more. I can't drive ever.

    I get harassed for having sensory issues.

    I get told all sorts of scat when I complain about sensory bombardment: that it's not violence, that I shouldn't be allowed out in public, that abled people have no responsibility not to harm disabled people, and oh yeah, that ableism doesn't exist.
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