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Visible Self, Invisible Disabilities

My name is Jennifer. I am 32 years old, and I am disabled.

People like me are not a dime a dozen – but we are around, more so than you know. Many disabilities are completely invisible. Take one of mine, for example: I have something called ankylosing spondylitis. (Say that five times fast.) In layman’s terms, my hip joints are fusing together, as are the vertebrae of my spine. I can walk, sure; just not for too long. Stairs I can take, as long as there are only about ten, and I have someone helping me up. The rest of the time, I’m in a wheelchair. Someday, that wheelchair will be my home. (That reminds me: find bumper sticker that says “My other car is a TARDIS” or something corny of the like, and start decorating the back of that thing.)

I remember being in high school. I thought it was Hell – who doesn’t? – but looking back… I ran, and rollerbladed (’90s alert), dreamt of being the first ice skater to skip all the prelims and land myself in the Olympics. And oh, I swam. From the minute that the community pool was opened, that’s where I was. I did backflips off of Olympic-sized high dives. I was never so happy as I was in the water, play-fighting my friends, or, well – pretending I was Ariel. (Don’t judge me; you did it too. That out-of-the-water hair flip took perfecting.)

Disability of any kind is a loss of freedom that you never even knew you had. You don’t think about the fact that you can rollerblade around your neighborhood listening to Ace of Base. (Once again, I have aged myself.) Can’t get someone to give you a ride somewhere? Eh, whatever. You’ll just walk or bike!

Facing that wheelchair means that you can no longer lie to yourself that these things are still possible. The first time I sat in mine, it was like a steel wall coming down. I am, unless science gets with it and fixes a few things, unable to do those things that made me so simply happy not so long ago. And there is nothing I can do about it.

There are always steps for grieving the loss of something. In my case, it’s mobility. Self-reliance. Friends, even. Living a pain-free life. The loss of memory due to epilepsy. I even grieve the loss of the simplistic view that my doctor knows what’s right for me; I’m such a complex case now that I’ve lost that firm belief that we have as children that the doctor is going to make you better.

Being young and female is a definite part of that problem. Have you ever heard of the story of “hysteria,” during Victorian times? We crazy women, always causing problems… the Victorian doctors came up with the catch-all diagnosis of “hysteria,” and decided that our problem was that we were the “gentle sex.” We couldn’t handle anything harder than childbearing and rearing, and keeping a house clean. Granted, we did get the vibrator out of the whole mess, but the “hysteria” diagnosis has never truly gone away. It’s just changed names. Hysteria goes by these names today:

You’re women, therefore you have a lower pain tolerance.

All you really need is a few Klonopin and a pat on the head.

Cramps can’t hurt that badly!

You’re young; you don’t need that wheelchair. You just need some exercise!

Honey, trust me. In about a few years you’re going to meet someone wonderful, and you’re going to change your mind. If I were to tie your tubes, now, where would that leave you? Motherhood is what we’re put here for!

Women are especially prone to psychosomatic (read: all in your head) illnesses. Let’s have you take heavy-duty antidepressants.

And if you do happen to become pregnant? We (the doctors) know what’s right. Here’s a miles-long list of things you can’t have, reading assignments that will scare the shit out of you, and by the way? When you do give birth, you have no choice as to where or what your comfort level will be. Because we know best.

And that’s the problem in a nutshell: Everyone knows what’s best for you – except you.

I have been in my body for 32 years now. I know its ins and outs. I know, for example, that my entire life, I have had high tolerance for any and all medications. Some people can lick a Benadryl and be out for a day. Me? Nothing. I can receive the strongest painkiller used in hospitals, and while it will make me woozy and really talkative, I will not sleep. I need multiple doses in order to not be in searing pain – and precious few ever believe me.

I am a woman, a weak little thing that does not know my own mind to the big smart (mostly male) ER doctors. I could tell them my body’s quirks, and how, no, Levsin does NOT work on me, and I’m written off. I don’t believe it’s just me, either – I believe that this is modern-day “hysteria.” Doctors announce that women just can’t take pain, or that we’re hypochondriacs. It’s the reality of being female in a male-dominated health profession.

We, as women patients, learn to suffer quietly. And so I always have, because that’s what “real women” do. We don’t fight. We’re quiet. When you’re in an ER and in massive pain and the doctor says, “I don’t believe in giving more medication than one dose,” you shut up.

This has to stop. Nobody has to be rude; but young women have got to start standing up for ourselves, as the painful knowledge sets in that nobody else will. These doctors should be challenged. “Sir, if you leave me like this, I want to know that you know that you’re intentionally leaving a patient in high levels of pain.” If that doesn’t work, call the charge nurse. Ask if there is any way of getting another doctor to see you. Call the Patient Advocates for that hospital, if you’re within business hours. And if all else fails, send letters: to the doctor, the hospital’s CEO, the head of the ER department; flood them. Make yourself heard. It’s a terrible thing to have to do, but what else is there?

The only thing I can promise you is that you are not alone. Young disabled women form a disjointed sort of sisterhood; we can’t get out without help, so we’re a bit like hermits, but we can and should find each other. I may not be able to get up the damn stairs sometimes, but if you’re disabled like me, you will find in me open arms and someone who understands you better than most.

My name is Jennifer. I am 32. I am disabled, and this is my life.

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35 thoughts on “Visible Self, Invisible Disabilities”

  1. Hey, me too!  I also have Spondylitis and silently suffer.  Well, sometimes I’m not so darn silent about it.  ;-)     I even have a service dog who wears a vest with a patch which reads: “Not all disabilities are visible”.   Guess what happens?  Nine times out of 10 people ask me if my dog is in training, and when I say, “No, he’s mine.” , the nice people just kind of give me a look to see if they can figure out what’s wrong with me.   The less-savvy people have actually said:  “You?  What’s wrong with YOU?”    < . . . > “I am surrounded by assholes” comes to mind.

    I am 43 and got my diagnosis about 3 years ago now.  I am not afraid to speak my mind to doctors, or CHANGE DOCTORS when someone is unprofessional or just plain does not believe me.    Heh.  I’m somewhat famous in my family for challenging a neurosurgeon who was being uppity.  Oh yes, yes I did!  I second your ‘be your own best patient advocate’ guidance; I have coached many a friend to not be afraid to ask direct questions and to ensure you have a solid relationship with your primary care physician.    And I 2nd AND 3rd your advice that we need not suffer pain without medical help, if needed.  It infuriates me that doctors are more worried about possible addiction then they are about ACTUAL PAIN HAPPENING NOW, you know?   Grrr.   Luckily I have a very good pain management specialist who – while cautious in prescribing, as he should be – does in fact *listen* about my pain and prescribes accordingly.  Even though my stupid state just passed rules to make it harder to get recurring pain medication prescriptions.   Because some idiots out there overdose and so in order to protect the careless and/or suicidal, the millions of us chronic pain sufferers have to struggle with increasingly difficult laws in order to get our meds.  Sigh.

    I am sorry that you are suffering from this damn insidious disease which no one has ever heard of but which is so prevalent.  But happy to read your piece and looking forward to more in the future!

    1. I am SO sorry that you have to suffer from AS, too, but everything you just said… I get you. And it just feels GOOD sometimes to hear that someone out there is going through the exact same stuff (although I would much rather that you didn’t have to!). I change doctors a lot; I find that a lot of them get lulled into this idea that if something can’t be diagnosed with a few blood tests and a CT at the most, since that *does* cover most people’s problems, that anything outside that must be this modern equivalent of hysteria. It’s easier for a lot of the doctors that I’ve run into to believe that it’s in my head than it is to believe that it’s a problem that’s 1) past their abilities or 2) something they just haven’t learned yet. Zebras are rare, but they/we DO exist; I just think that they deal with horses so often that when a zebra does present itself, they can’t imagine that  it may not be a horse, if you know what I mean.

      I do have a good pain management doctor, who was incredibly hard to find. (I had one lovely pain doc who I quit after he told me that fibromyalgia could just be treated with a good yoga class. Fuck YOU, buddy.) This doctor… If I could call the Vatican and have him fast-tracked for beatification, I would. I’m terrified every month that I go in that he’s going to look at me the wrong way and decide that nope, she’s not really in pain, but it never happens. I am SO grateful for him, especially given how hard it was to find someone who would listen.

      Pardon the wordiness here, but I wanted to take the time to thank you for coming out and saying that you suffer from the same things. Gentle hugs to you, ear scritchies to your dog, and thank you – I feel less alone knowing that there’s someone out there just like me. :)

  2. This was a really powerful read; thank you. I caught myself nodding in agreement so many times.

    I have my mobility back a year ago thanks to some great doctors and a successful back surgery, and leading up to it, I knew if I ever got to the point where I could put one foot in front of the other again without pain, I’d never take it for granted. It’s so discouraging to see doctor after doctor whose first words are “You’re too young to be this sick!” (or just a yelp when they look at your MRI films). But I’m glad you’ve gotten to a place too many of us never do: sticking up for yourself. It can be a profoundly hard place to reach.

    1. I’m so glad you’ve found good doctors; it can be so hard to do. And I swear, if I never hear “but you’re so young!” again, it will be TOO SOON. I hate that with a passion. I get that and “you’re too young, you’re NOT sick, quit worrying”, which also makes me see red. I quit my last GI doctor because he said that last one after I had just come out of the hospital from dealing with clostridium difficile (potentially deadly bacteria overgrowth in the GI tract that causes hell and is serious enough for hospital isolation). I looked up and said “Yes, sir, I AM sick.”

      I hate having to stick up for myself. It’s not something I’m used to doing, but I’m working on getting better at it.

      Gentle hugs to you, and thank you so much for your comments.

  3. Great article! I have AS as well, although it affects me much differently. My main problem is with my SI joints (a lot of discomfort/pain with sitting, I basically just don’t sit unless necessary now, b/c my SI joints are too stiff to move that way and take the pressure through them that comes from sitting) and with my upper spine (neck and where my ribs and T-spine meet). It took me a year to get diagnosed, which at the time seemed like forever, but having read other people’s stories, it doesn’t seem to be that long after all.

    It was so hard to even get to where I could get a diagnosis though. I know what you mean about doctor’s who wont believe you, or believe how you experience your body. My problems started off with back pain and gradually progressed to worse pain and problems sitting, walking distances and then problems with other areas of my body. It was such a fight to get my GP to listen and to investigate further. She thought it was psychological, or that it was stress (she never said it, but I’m sure she also thought that I was making it up). I don’t know how I would have kept pushing her to investigate without the support of my Mom. And without insisting that there was something wrong, that there was something that needed to be looked at, I never would have ended up seeing a rheumatologist and getting a diagnosis. It has been so much better seeing him, but my GP *still* doesn’t believe I have AS, even with the diagnosis of a specialist.

    I don’t know if it’s because I’m a woman (although I think your connection to hysteria is very apt, and makes a lot of sense), but I think that it ‘s so terrible when doctors don’t want to listen, or investigate further, especially when problems are chronic, or not easily diagnosed. And it’s especially awful because when you are sore or sick it can be so hard to advocate for yourself. I hope that wasn’t too much rambling about myself, anyways, thank you for sharing your story here :-)

    1. Thank you so much! I’m so sorry that you have AS too. It sucks.

      You hit on something else there that bothers me about all of this. I have a hard enough time being believed, but if I didn’t have my husband with me…? I’d get tossed out of places so fast my head would spin. I wonder what it is that makes healthcare workers trust other people who are dragged in by the patient more than the patient themselves. Hm.

  4. Thanks so much for posting this!

    I have some experience with this phenomenon. My mother did too: she internalized it, and therefore modeled it to me. She had a super-high tolerance for living with a certain amount of pain/discomfort, and a super-low tolerance for pain medication: therefore, anyone who was in pain was just complaining about something, and taking medication for pain wouldn’t work, obviously, so the choices were suck it up, or be looked down upon because you couldn’t deal with it. Nothing was as bad as all that, you know.

    I’m just now realizing (at age 32)  that I must be my own advocate: I don’t have to live with being in pain, and no one except for myself can tell what I’m going through physically. It’s up to me, and I must be comfortable with absolutely demanding things of others–no matter how much uncomfortable I am doing so. No one’s going to look after me like I can myself.

    1. What you’ve realized is absolutely right: You are the only person that can be your advocate. I had a mom who’s play the “You call THAT bad? Well, I used to…” game as well. That’s not fun, and it’s left me with a lot of insecurities medically. Breaking through all those messages is hard, and I think you are just the most awesome person for doing. *gentle hugs to you*

  5. Thank you for posting this. I have been incredibly lucky in finding doctors, since I need a whole team of them (Crohn’s, spinal arthritis [possibly AS that just isn’t bad enough to show up on X-Ray yet], reproductive issues….). And, fortunately, my friends have gotten to a point where they are all understanding. The people who tell me that I can’t do things have been cut out of my life – the ones who, if they saw me carrying anything, would take it out of my hands because I “shouldn’t be doing that,” when it is actually incredibly satisfying to be able to do things on my own, and that is something that I need in life. As it is, I am possibly facing an upcoming move, and am kind of terrified about that. I’ve already done one move where I was completely unable to do heavy lifting, and I survived that. And, for this one, several friends have stepped forward to offer to help me pack, which is huge. So… thank goodness for support systems.

    1. Thank you for your response! I’m so sorry you’re having to go through all that. (We think I have Crohn’s too – just lacking the diagnosis.) I’m so happy that you’ve had good friends stick around you. Support systems are everything.

  6. Modern hysteria, wish I’d made that connection. Although I can’t even comprehend your strength in dealing with your situation I can completely sympathize with doctors not listening to you about medication. For me my body metabolizes medication so quickly that I have to have a stronger dose. And yet, I’ve never yet had a dentist that has believed me so every first visit has resulted in major pain during the first visit. Fortunately, after switching from my childhood dentist who never learned the lesson, they’ve all remembered after the first visit.

     

    1. I wish I could never deal with pain medication, ever again. Good LORD. Most doctors seem to have the idea that, if they give it to you once, you’ll be addicted and out on the street. (One guy told me he had to write a huge report every time he gave a patient Morphine or Dilaudid. Um, honey? I think you read something wrong.)

      Everyone’s body is different – especially when it comes to pain (don’t get me started on that stupid pain scale!) – and I am SO happy you found dentists that get you.

    1. Thank you, Sally! I really do feel as if I’ve been treated differently since I’m a woman. I remember one instance where I was separated from another patient by only a curtain. I was in for severe chest and abdominal pain, and had never been in that hospital before. I had to beg and beg for pain medication, while the man next to me with heartburn (his words) got an instant IV and 2 mg of Dilaudid. I’ve seen it happen a lot, and the best explanation I can come up with is that if a man says he’s a 2 on the pain scale, the doctor hears  “10”. If a woman says 10, the doctor hears “2”.

  7. My aunt taught me the same thing, in her case because of severe depression. If you know you are getting bad treatment, keep talking until someone listens. If you can’t convince one doctor, go to someone else. It’s frustrating, but we have to be our own advocates.

  8. I hadn’t made the modern day connection to hysteria before now — You’re right, that dismissiveness is certainly similar. My chronic fatigue and (likely) fibromyalgia are also invisible (except for maybe these dark circles under my eyes, ha), and while I’ve had mostly good luck with doctors so far, it’s “regular” people who take awhile to get that it’s not just a matter of pounding an energy drink to feel better.

    I’m so sorry you’ve had a tough run of it, but I’m glad to read that you are trying to challenge the “hysteria” system in place. You’re right, we do need to stick together.

    1. I have fibro as well, and it’s a particularly tough one. It’s a problem when your first step is to find a doctor who believes you! (The number of doctors who don’t believe fibro is real is mind-boggling.) And able bodied people… Totally get you on that one.

      *gentle hug*

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