When Your Disabilities are Invisible

Epilepsy Awareness BadgeI am disabled. To look at me, you’d never know it. I don’t qualify for a handicapped tag. I don’t have a service dog. Nevertheless, I am disabled. Ironically, it’s not my primary disability that plagues me the worst, it’s the permanent side-effects that have resulted.

You see, I’m epileptic which is a legally defined disability covered by the Americans with Disabilities Act. I have been experiencing seizures since I was eleven years old. The first time I ever seized was at the funeral of a great-aunt. It was a horrifying experience. 29 years later, it’s still terrifying every single time.

As you might imagine, having a disease that tends to strike with very little warning at random times means that I have fallen and hit my head quite a lot. I have scarring and blood spots on my brain as a result of repeated head trauma. I also have a propensity for detached retinas. My left one detached in 2009 and a botched surgery has left me with permanent, partial blindness in that eye.

Also, as a result of small abnormalities in my brain, I have a hearing disorder. If all is quiet, I can hear at levels approaching that of a dog. But, the instant you add any kind of background noise, it all melds together. I’ve learned to read lips, so that the world doesn’t sound like Charlie Brown’s teacher. However, if I’m not looking at you, I won’t understand what you’re saying.

All of the above can be very frightening for me. It often makes me feel blind and deaf despite being both sighted and able to hear.

The epilepsy is a bit easier to deal with. I generally hide my epilepsy until a situation forces me to reveal it. I’m at that point now at work. When I took this job, no one told me that the agency was spread across five buildings. Because of my epilepsy, I don’t drive unless I absolutely have to. The last thing I want is to be behind the wheel and seize. I’ve been very lucky so far, but I don’t like to risk it. Even though my seizures are controlled with medication, breakthrough seizures can, and have, happened.

Eye ChartWhen I’m asked to travel for meetings just so someone can have “face time” I’m resistant. But, the instant I reveal my epilepsy, it’s like I have the plague. I almost lost my last job over it. I was forced to be assessed for “fitness to work”. It was embarrassing and infuriating. So, I’m waffling over whether to reveal it now.

My eyes are a bitch to deal with. I have my computers both at work and at home set up for the visually impaired. I make use of screen reading software when necessary. But, let me tell you, external signage and things of that nature are not designed for people who have difficulty seeing, yet are not blind. I often cannot read small signs. Newspapers and magazines are virtually impossible for me to read without a magnifying glass. I bought a Nook just so I could adjust the font size because when I would check out large print books at the library, I was treated like I was stealing from the elderly (the main audience of large print media). I’d get dirty looks and have to control my desire to curse out the clerk checking my books out.

Closed Captioning IconI have just as many issues around my hearing. My impairment is such that I cannot distinguish foreground sounds from background sounds. As a result, I cannot differentiate dialogue in movies and television without difficulty. At home, I use the closed-captioning option on my TV, and bless Netflix for adding subtitles, Hulu too. But there are still times where I can’t get subtitles and then can’t make out what’s being said. Vudu, the HD movie streaming site, doesn’t offer subtitles. Neither does Amazon Instant Video on many of the movies. This means I miss the majority of what is being said unless the actor is facing the camera. A lot of times, I just pass up the movie now. At movie theaters, I’m not interested in being treated like I’m scamming the employees when I ask for assistive devices because I’m not deaf.

Don’t even get me started on phone conversations. Those are hell. I avoid the phone at all costs. When I’m on my mobile phone, I have to use stereo headphones that I can insert into my ears, so that I can dampen any surrounding noise. And that’s only half the battle because I still can’t see you to know exactly what you’re saying. My daughter’s father and I have started to use video chat, so that I can see him speaking!

My disabilities are invisible and we seem to live in an either or world. Either I can visually confirm you’re disabled or I don’t believe you. The thing is, it’s really no one’s business, but just because you can’t see my disabilities, doesn’t mean they aren’t there. Or, that I don’t have to work around them.

8 thoughts on “When Your Disabilities are Invisible

  1. my husband has seizures and has had them almost his entire life-he also works and we understand what you are talking about when you say you almost lost your last job over it-we have been there done that too-due to the work field my spouse is in his hearing is shot as well-and recently he has been having diffulty seeing(that is mostly due to old age) I feel deeply for you-lots and lots of hugs and best wishes

  2. I came back a second time because I really do wish I could hug you-from being around my husband all these years-I know that people who live with disabikities are trule some of the most amazing folks in this world-what “saves” my spouse most of the time is that he is very friendly-so that people do not tend to over react when he seizes-it still scares the crap out of me because he has gotten hurt and when others are around him they may not know the proper things to do

    • Oh man, I’m so sorry to hear your husband experiences this. I’m glad he has you. Having someone who cares there to see you through the aftermath makes all the difference in the world.

  3. At some point soon I am hoping to have enough “thinking on my own” facilities back to reply to this at length right now, the meds, the meds make me feel like I am slogging through mud. 😦

    I will say the meds I am on right now is a drug cocktail used for epilepsy because they dull neuropathic chronic pain and when I read this I wanted to find you and give you a huge bear hug.

    These meds are doing me in, I can’t imagine if you are using any of the drugs I am on, trying to cope with the drugs effects on just trying to function and what you have to deal with overall due you your epilepsy.

    • Thank you, m’dear. I appreciate your kindness. I’m very sorry to hear you on meds like that. I’ve taken Kepra, Lamictal, something so vile I’ve blocked it’s name from memory and Depakote most recently. About 2 months ago, I weaned myself off all pharmaceuticals and began to manage my epilepsy with meditation, a low-glycemic diet and St. Johns Wort to balance my seratonin. So far so good!

  4. Dear Elene,
    Thank you for sharing your personal thoughts and feelings regarding your disabilities.
    I have such Admiration for you putting yourself “out there”. So many of us suffer from medical conditions that we should be able to speak open and freely. If I may ask you, do you get “Aura’s” prior to a seizure?

    • Thanks, Astral, I appreciate that. To answer your question, sometimes I do. I definitely experience the prodrome every time, but not every time includes the aura. I always get nauseated, I always smell a sickly, antiseptic smell, and on a few occasions, I’ve hallucinated. I’ve only experienced a distinct aura on one or two occasions.

      All the best…

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