Invisible

Hello dear reader(s)!

I’m feeling kinda lousy today.  I have felt lousy most days since the end of my trip.  Yesterday, I went to the bank, and had to go inside.  The banker asked me what I did for a living when I asked about a direct deposit, and I told her I was disabled.  She looked at me in a way that I could tell she didn’t believe me, or thought I was “gaming the system”.

I was showered, I was smiling.  I spoke clearly and effectively.  My clothes were clean.  I felt terrible, but it didn’t show.  It was about the only thing I did yesterday.  I got there about four in the afternoon and it took me all day beforehand to work up the strength and energy to leave the house.  In that instant, she knew none of that.

The issues that make up my disability are invisible.  My kidney damage doesn’t cause a limp.  My cataracts only show up when a light is shined in them.  The memory issues that continue to plague me can’t be seen.  My gastrointestinal issues are on the inside.  The fatigue can’t be seen.  My poor immune system and lack of B cells do not show up on the skin.

Yes, on occasion, I can be a functioning human.  I can occasionally exist in the world, sometimes even days at time.  But when I do, I pay a heavy price.  A little activity leads to a lot of downtime.  Being around too many other people is risky.  A cross-country road trip makes me vulnerable to whatever little bugs most people can fight off may be out there.

I took the trash to the curb early this morning, and it just about killed me.  All of the sinus issues were aggravated by the cold early morning air, and I spent the next 15 minutes in a coughing fit gasping for air.  But all of this is rarely seen.

If you see me out in public, I look healthy.  Healthier than a lot of people, actually.  But looks are deceiving.  I am far from healthy.  People see that I have a bit of muscle mass, and that I am not carrying a ton of fat (plenty, but not a ton), and just assume that everything must be okay.  They have no idea what it took just to get through the shower and get dressed and ready to go out in public that day.  They have no idea what the next few days will be like for me because I dared to go to a friend’s house, or the grocery store, or the post office.

The disabled in this country are treated like shit.  Unless you are in a wheelchair with an American flag flying from it and a hat from whatever ship you were once stationed on, nobody even believes you are really disabled.  I paid into Social Security.  It is insurance.  The process is not at all easy and requires actual proof.  I am on Medicare now, and people think it is a damn entitlement.  It isn’t.  It is a fucking insurance policy that I paid into and had to take because I got fucking cancer and the treatment fucked me up.  That’s it.

Disability is looked down upon so much, that almost all Medicare Advantage and Medicare Supplement plans act as if only Senior Citizens should get Medicare.  Some of the Medicare Advantage plans in places I have lived even have Senior in their titles.  Almost all include some gym membership called something like Silver Sneakers or some other bullshit that totally ignores the disabled segment of people on their plans.  Then they sell your information to AARP so that they can send you their junk mail with all of the other pieces of unnecessary paper that never needs to be sent.  Yes, fuck you Humana, you inhumane profiteer, pieces of shit.

Then you have fucks like Paul Rand Ryan trying to pit the rest of the country against us.  Trying to privatize Medicare and Social Security because the money we paid in was raided by all of those career politicians to pay for their pet-projects.  They want to tell us what to eat, what medicines we should be taking over the advice of our doctors, and how we should spend our insurance money.

Listen here motherfuckers, if I scrimp and save all month-long, live with a roommate, and don’t buy a ton of other expensive shit in order to do it, if I go out to dinner and order a steak with my insurance money, that’s none of your fucking business.

I am not the reason your taxes are high.  Your taxes are high because you elect fuckers who give welfare to corporations.  Your taxes are high because the US has to have bases all over the motherfucking globe to protects its “interests”.  Your taxes are high because your gigantic military is basically a publicly subsided private security firm for international corporations.  Your taxes are high because payroll taxes are capped at $127,200.  Not because of my insurance.

The issues that make up my disability are invisible.  I, however, am not.  The other disabled people, are not.  As much as you might like them to be, we are not going to be.  We will fight for the respect and treatment that we deserve, whenever we are able.

 

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Author: Josh Wrenn

Cancer survivor, wanna-be artist, musician, author, and all around good guy.

21 thoughts on “Invisible”

  1. I know what you mean, I know it so well. I have an autoimmune disorder and while I can control it with my diet most of the time, there are days when everything hurts. Still, I look the same. It’s hard to explain to anybody who doesn’t have to deal with it.

    However, I feel that many here in this country abuse the system. I know I few myself. I always feel that the ones who really need don’t get paid enough, while the ones that abuse the system get paid too much. Does that make sense?

    Liked by 2 people

    1. I don’t know and have never met anyone who games disability. I don’t even see how anyone could. There are reviews, it’s hard to get on in the first place (auto denials, etc…), and you make jack. What makes you think they’re taking advantage?

      Liked by 2 people

      1. I know two who stay on disability and they work on the side CASH only. One of them had liver transplant 3 years ago. He is doing fine and he is working hard, just not official. “I like the monthly check,” he says and I just shake my head.

        I feel that the system has gotten tougher over the last years, so tough that many get turned away, even though they should have disability.

        I believe the ones cheating the system will always find a way.

        Liked by 1 person

      2. Wow. That’s crap. If I knew someone was taking disability and working under the table, I’d turn them and their employer in. Fuck that. Call me a rat, but like you said, they make it harder for people who need it.

        Liked by 2 people

  2. Well stated, I’m all for the disabled fighting for their rights, and dare I say… entitlements. Entitlement become a dirty word when Republicans want to steal a bigger piece of the pie. Nowadays there’s very little left to steal so…
    more austerity for the poor and disabled. Just look at Greece, austerity doesn’t work, just prolongs the pain of a country’s demise. I’m quite surprised the Grexit “revolution” never happened.

    With all that being said, I’m all for self-reliance. Our so called health-care system is cancerous, relying on surgery, chemo and big pharma drugs. True healing comes from mother Earth. Herbs, raw organic fruits and veggies, whole grains is all you need. Of course our doctors will never tell their patients that, who wants to give up a cushy racket like that. Self reliance is the answer. 🙂

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  3. While I am not disabled, and hope I never am, I do suffer with invisible illness. Occasionally something that can be seen with the naked eye shows up, but mostly not. I don’t even write about it, because when I do, I sound like I’m trying to convince people, and I don’t need the hassle. I drop in a few words that people like me understand, but fuck the rest of em.
    Of course, otherwise, I say I am lucky. Lucky lucky lucky.
    I believe in the inherent worth and dignity of all, and I do not mind helping those who are not as lucky. I believe perhaps compassion is a side-effect of invisible illness. I don’t need to shine a light into eyes or ask for x-rays to feel compassion.

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  4. I feel that way often – disability is hard, invisible disability is that much worse. Yes, I know the sticker on my car has a wheel chair on it but that’s not the only kind of disabled!!!

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  5. *Gives you a standing ovation. Grabs the cat & makes him clap his paws too.*

    OMG, I can’t express to you how freakin’ right you are! As a young person, getting disability in itself was a freakin’ job! It took me 4 years & the process made me so despondent, my lawyer tacked on my depression in the application (it hadn’t been a problem in the beginning, despite having a diagnosis from a young age).

    I may not have worked as long as an older person, I may have run through the money I put into the insurance policy, but I want to give my all to my employer. I can’t do that now when every day is spent addressing my health. I still hope to get off disability, but even the government looked at me as a liability… a mooch… a liar. 😥

    Now, I’m afraid to tell people how I have money to survive (& go to the doctor… & have health insurance). I’m frightened of their possible reactions. I’ve had people tell me they couldn’t date someone who didn’t have a “real job.”

    But… eff them. My favorite psychologist (who was managing her own serious, chronic pain condition) put it best: “For right now, managing your pain IS your job.”

    Liked by 1 person

    1. Yeah, but that is how insurance works. People pay into a pool, knowing that some will take less than they put in, and some will need more. And even with baby boomers retiring, there would have been enough in the system if it was never raided, and it would help if the payroll tax cap was lifted.
      It is ridiculous what we face. I tell people I am likely capable of working, if work had no schedules and reliability wasn’t an issue. Some days I feel great, just not regularly or predictably. And of course, the fact that I put myself at risk to getting really, really sick working around people is an issue too. But still, I worked hard when I worked. I was a good employee. If I could work today, I would. I hope to one day, but that is hope.
      As for dating, I run into that too. A lot. Especially as a man in the patriarchy, women want providers. They look at you being able to take care of them financially instead of what else you can offer.
      Taking care of my health, dealing with the paperwork, and all of that, definitely is a full-time job.

      Liked by 1 person

      1. Yeah, I know how insurance works (unlike some people… *cough* Paul Ryan *cough*). I still feel badly, though – like I’ve “overstayed my welcome.” 😦

        What you said about being unable to work consistently is exactly what I had to explain to the judge… & quite a few family members who just didn’t get it. They especially don’t get it if they see me on a “good day,” but don’t see me for months on end.

        It’s incredibly frustrating. 😥

        Liked by 1 person

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