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.