invisible disability

Not really accommodating.

/ hopeforsanityblog / 2 Comments

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It’s frustrating trying to explain invisible disabilities to people who don’t understand disability.

It’s even more frustrating when people, places or organizations which claim to specifically accommodate or treat folks living with a specific disability or illness, don’t even remotely accommodate the symptoms of that condition.

I live with chronic, complex PTSD which has remained somewhat unresponsive to treatment.  I consider it a disability because for me, at this time, it appears to be permanent and it impacts my life on a daily basis.  It changes the way I think, act and complete tasks of daily living.  It also changes on a daily basis, which means some days I am quite simply more “able” than other days.

I recently sought alternative treatment at a clinic which claims to specifically treat people with PTSD.   This is their main focus is on helping clients with PTSD that has not responded to psychiatric medicine.

Logically, I thought that this clinic would be expert at accommodating the disability of PTSD.  Makes sense right?

I had a pretty good first experience there.  The doctor and the counselor I met with were helpful.   But the receptionist…not so much.

I had some issues with the treatment that was prescribed.  This was nobody’s fault.  But I needed to make another appointment to change the plan, shortly after the first appointment and sooner than planned.

To someone without PTSD and extreme anxiety this wouldn’t have been a big deal.  Just call, re-book the appointment and move forward.

But for me, it was a nightmare.

I felt like it was my fault.  I’d chosen the wrong plan to begin with.  They were going to think I was crazy for changing my mind.  They weren’t going to believe me about the side effects.  They were going to question me.  I felt embarrassed.  I felt ashamed.  I avoided making the call.  I invented stories in my head about how bad it would be going back. I felt angry that the plan hadn’t worked out.

I avoided calling the secretary and emailed the counselor.   He had told me I could contact him if I  had any issues and had seemed approachable.

Person with PTSD is going to choose to approach the least threatening person.  Person with PTSD (me) is going to choose email rather than speak to a person on the phone if they feel embarrassed.  The phone sometimes seems extremely intimidating to me.  What if I get nervous and say the wrong thing?  What if they say something that upsets me?  With email I can plan what I’m going to say and the response.  There is time to react calmly and clearly.

The secretary called me back.  I missed the call.

Then I avoided calling her back.  Anxiety was making the decision.

She called me again.  I missed the call.

I avoided calling her back.  Anxiety was making the decision.

My kids got sick, I had a stressful week at work, I procrastinated calling her back. I was busy with other things.  But I was also working through the anxiety, getting myself to a place where I felt I could make the call.

She left me three messages and probably about 3 weeks went by.

Today I called her back, expecting to apologize for not returning the call sooner, make an excuse about my kids being sick and then re-book my appointment.

But receptionist was cold and very abrupt.

“You waited too long to call me back.  There are no more appointments.”

I was confused.  I asked her until when.

“Until the new year”

I said that was no problem, could she book me in for January.

“I don’t have the schedule for January”

Um….okay…I was getting really anxious by this point.  I asked her to call me back in January and ended the call.

When I got off the call I was frustrated and angry.  I’d been anxious to return the call because I was afraid of being judged for needing to re-book the appointment in the first place.  I waited because of anxiety.  I waited because I felt stupid and I was judging myself.  The anxiety was related to my PTSD and anxiety is a common symptom of PTSD.  PTSD is the reason I was seeking the treatment in the first place.

I told myself the fear of being judged was irrational and that the clinic staff would understand and assist me in booking an appointment because they were there to help me.  I told myself that they would understand that someone with PTSD might be anxious about making a call and thus might procrastinate.  They might understand that someone could have a few rough weeks and not return a call.  I reassured myself.

I made the call.

But it turns out my anxiety wasn’t misplaced.  I wasn’t able to re-book my appointment.  They were annoyed that I didn’t call back right away.  And I’m now seriously questioning how well that receptionist knows how to accommodate someone living with the disability of PTSD.

It’s not about the fact that there was no appointment until January.  I’m fine with that.  I procrastinated, I wasn’t expecting to see the doctor tomorrow.  But the phone call could have been handled differently:

“I’m sorry to hear your kids have been sick and you weren’t able to return my call.  I’m glad I have you on the phone now.  Unfortunately our appointment slots are booked up until after the holiday break, but can I fit you in for the New Year?”

Another option might be

“It sounds like getting phone messages and returning calls is difficult for you, and email is easier.  Sometimes people with PTSD find calls difficult.  Don’t worry, we can book your appointments over email as an accommodation.  Let me book you in for January.”

This post isn’t about that one receptionist and this one situation.  This post is about not making assumptions about why people behave the way they do. Especially if you work in an organization providing health care services!

It’s also about realizing that accommodation for people with disabilities means more than just building a ramp (though ramps are needed too, I’m not knocking ramps!).  It means realizing that disabilities impact different people in different ways.   Accommodation isn’t always something complicated or expensive.  Sometimes it could be as simple as using email as a way of communicating, or offering choices for methods of booking appointments or receiving information.  Accommodation starts with realizing that not everyone lives life the same way you do.  We all have different abilities and that’s okay.

It’s rude to stare.

/ hopeforsanityblog / 2 Comments

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I’m not speaking for all people with disability here, there are my own opinions.  Trigger warning for description of self harm

I identify as a person with disabilities.  The thing is, that I live in an interesting position where some of the time I have the privilege of “passing” as a non-disabled person and some of the time, it’s obviously visible that I’m different, strange, mad, crazy, mentally ill, or whatever label people might want to put on my experience.

I experience my PTSD as a chronic disability rather than an illness.  It’s something I live with and cope with and I don’t expect it to suddenly be cured or disappear.  I don’t consider myself “sick” but I’m not really well either.

One of the ways in which I coped with having undiagnosed and improperly treated PTSD was to cut myself.  I cut myself for many years of my life.  Because I had severe adverse effects from psychiatric medications I cut myself deeply, chaotically and severely.  As a result I have visible scars over the majority of my body.   These scars are covered by long sleeves and long pants, but can be seen wearing any other type of clothing.

I have a number of close friends who also identify as having disabilities, and I work in a field where I have read, heard about and studied oppression related to disability.  What I want to talk about is the situation I encountered last night.  The one in which able-bodied, sane, or well people feel the need to STARE at, or comment on, disabled bodies.   The staring makes me feel instantly like a circus freak, instantly judged, instantly “less than” and instantly oppressed.

I was out at the dance last night and I’d invited along a woman I’ve met up with a few times.   It’s been winter weather so this was the first time she’d seen me in a short sleeved shirt.  I hadn’t mentioned the self harm to her.  I had mentioned my past abusive relationship.   When I arrived, I noticed her staring at my arms. I noticed her staring at them on and off over the course of the evening.  She never said anything about them, just looked at them awkwardly.

I was already struggling yesterday.  I was having a lot of body dysphoria and feeling self conscious and negative about my body.  I’d been at a party earlier and I was hot in my sweater but I didn’t want people looking at my arms, so I left it on.  Often I forget about my scars now, but some days I’m hyper sensitive because I don’t want to risk being under the “judgemental gaze” of able-bodied or sane folks.

Here’s what I wish folks would do when they notice my scars:

  1.  You’ve noticed my scars.  You are curious. I get it. But this isn’t about you.  Please don’t stare.  I’m not a circus freak.
  2. If you must ask questions about it, if possible wait until a quite private moment and then politely ask me what you want to know.
  3. If you absolutely have to know.  Please don’t stare.  I’d rather you ask me a question about what you want to know, even in a public place than continue to stare or sneak glances at me.  Believe me  I SEE YOU LOOKING AT THEM.  You aren’t getting away with looking at them subtly.  In general, people with visible disabilities are vigilant to noticing people staring at them.
  4. Remember, I’m still the same person I was before you noticed the scars. Nothing has really changed.  Your reaction to my scars is more about you, than it is about me.  If you are seeing the scars, it means I am comfortable showing them.  You are the one who is making the situation uncomfortable by awkwardly staring at me!

And here is a list of answers to some commonly asked questions about my scars.  Maybe this will help you to not ask these questions to other people who self injure, maybe it will help others understand a bit better.  To be fully honest, people rarely ask me questions about my scars.  I sometimes wish they did ask me.  I’d rather be asked questions than be stared at and be left wondering what the person was thinking.  But there are some common questions and questions I imagine folks have.

  1.  Do they hurt?  No, most of them don’t hurt.  There are a few that didn’t heal properly or weren’t stitched properly that do hurt.  Some of them itch or the skin pulls at times which can be uncomfortable.  For the most part they just feel the same as the rest of my skin.
  2.  Can I touch them? No!  That’s fucking creepy.  This is a trigger for me, because one of my abusers asked that question.  I don’t think it’s cool, cute, fun or sexy to have them touched specifically during intimacy.  Please just treat them as part of the rest of my skin.
  3. What happened to you?  They are scars from self inflicted injuries, mainly cutting.  I hurt myself as a way of coping with ongoing sexual and emotional abuse over a period of time in my life.  I also had serious adverse reactions to psychiatric medication, especially SSRI anti-depressants which gave me obsessive self destructive thoughts and impulses over a 4 year period of time.  I was told repeatedly that “doctors don’t give you medication to make you sick”
  4. Did you have to get stitches?  Yes.  Lots of them.
  5. Did it hurt?  Sometimes.  But a lot of the time when I was harming myself I was disassociating and I didn’t feel the pain.  A lot of the time I was doing it I was numb and detached and felt very little.  It hurt a lot AFTER and when it was healing, when the disassociation wore off.
  6.  Do you regret it? Sometimes.  It’s hard to remember a time when I didn’t have the scars.  To be honest the scars trigger me sometimes which is why I often used to hide them.  They bring back bad memories of times I’d rather forget.  But they are a part of me as well, a part of my story and a part of what I’ve survived.
  7.  What is the worst part about having self harm scars?  The worst part is the judgement I get when seeking non-psychiatric medical care.  So many times doctors have seen the scars and treated me differently.  They often make assumptions about me that are incorrect.  They assume I’m drug seeking, an addict, or that I’m unstable, lying, attention seeking, borderline etc.  I notice that doctors have the worst misconceptions about self harm.   Doctors often assume I’m LESS able than I actually am, and at times I struggle to receive appropriate medical care.  There is a great deal of stigma attached to having a mental health disability, especially related to self injury.

The take home message is simple:

Don’t stare at people whose bodies may be different than yours.

If you must ask questions, do so politely and privately if possible.  Ideally, don’t ask a lot of questions of complete strangers.  Questions as part of a friendship come across completely differently and can be more acceptable as a part of getting to know someone over time.

I notice you staring at me, and I don’t interpret it as polite concern.  I interpret it as intense othering.

I was just there for the dance.