You are fine…until you aren’t. Life with PTSD.

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Today was a rough PTSD day.  Sometimes that’s the way it is with PTSD, you are fine, fine, fine…until you aren’t.  And then you real aren’t!  Nights like this I love my medication so hard.  Nights like this I don’t even consider the choice of going off psychiatric medication.  Nights like this I know that I’ve been staying up too late, not listening to my body, pushing myself further than I can reasonably go, ignoring early warning signs and just generally not trusting my own inner wisdom about what I can handle.

I dropped the kids off with their Dad this morning.  That’s always difficult.  It always lowers my capacity and PTSD coping bar by easily 50% by 9AM.

I had a difficult phone call at work.  Had to support someone around a type of abuse experience that I find triggering.  I dealt with it well, but it lowered my capacity bar by another chunk.

I met a friend for coffee this evening.  There was a traffic mess and the person was late.  While I was waiting, a car with a souped up muffler purposefully back fired it, reving the engine suddenly right in front of me.  I was looking at my phone and the loud noise and vibration startled me a LOT.  Before my heart stopped racing, the car back fired again.  I jumped again.  I almost burst into tears.  My PTSD coping bar was now at 0-5%.

This level of startle response is NOT a warning sign of PTSD issues for me, it’s one of the clear signs that I’ve been ignoring warning signals for a while.  When I feel like crying after being startled in an otherwise safe situation, PTSD is on the scene in a major way.  It’s time to get safe, do some grounding, probably get home and away from crowds.

But I didn’t listen.  I had plans to see a show later and I knew it was no longer the right choice.  The sign said there were “loud noises and flashing lights.”  The self aware voice inside me said “Not tonight.  This isn’t going to work tonight”  but I ignored it.  I pushed myself.  I tried to be “normal.” I tried to have a full PTSD tank, when it was really running on fumes.

The person I was meeting there was in a different space, relaxed and ready to enjoy the show.

I needed some help to get grounded and attempt the experience.

I didn’t get it.

I was already inside the show.  There were strobe type flashing lights which I know can trigger migraines for me.  My anxiety got worse.  I started to feel trapped and afraid.  I didn’t know what to expect and my anxiety was escalating.  I knew a panic attack was coming.  Generally, there’s a tiny bit of warning before it goes to 100km panic.  I have a few moments where I’m thinking clearly enough to know I need to exit.  I need to get outside NOW.  I need to be outside 5 minutes ago.

I can feel my chest tighten.  My breathing is coming faster.  I can feel the panic rising and rising like a tsunami wave of fear.  I start to walk as fast as I can without running.  I don’t know how to get out.  I just keep walking forward, sliding past people.   Mentally I know that if the tears start before I get outside then I’ll need help to get out.  I don’t want to ask a stranger for help.  I don’t want to slow down.  I know I need to get outside NOW.  My chest is painful, the tears are in my eyes.  The dizziness is starting. I feel like it’s taking forever to find the door in the darkness.  I feel embarrassed.  I feel ashamed.  I feel afraid.

My hands are on the door, I can see the outside and then I’m out.

I’m hyperventilating now.  Walking as fast as I can.  Crying and breathing in choked breaths.  So dizzy.  I want to slow down, catch my breath, but my feet keep going forward.  I’m downtown, in the dark, alone.  I pick up my phone and dial a friend.  He picks up.  I’m sobbing now, into the phone not able to speak.   He’s asking me what’s wrong.  I’m still walking, trying to catch my breath, manage to blurt out “I’m having a panic attack!”   He knows I’ll be okay, I’m not in physical danger, just emotional.  He speaks in a soothing voice, encouraging me to breathe, until the tears subside enough for me to speak.  I’m gradually slowing my breathing now.  It’s taking a focused effort, but I’m doing it. My chest hurts so much it feels like it might explode or collapse or both.

I walk around for 20 minutes before I’m calm enough to drive home.  The panic subsides but I know it’s only a tiny distance away.  I’m not sure if it will stay away, or return, out of control, taking me back down into tears.

I get home safely.  Take my pills as soon as I’m in the door.  I know that within 45 minutes I’ll feel calmer, so I start typing this as I wait.

I’ve noticed that abelism towards mental illness looks like this:

Folks can understand the triggers I have which are directly linked to the violence.  They understand how to be careful with sex.  They understand why I can’t fall asleep unless I’m alone.  They understand aspects of PTSD.  But they don’t REALLY understand.   A lot of people don’t understand that any situation where I don’t know what is happening, feel out of control, feel a sense of danger or feel that my environment is too unpredictable can be a trigger and can remind me of the feelings of being abused.

They don’t understand that in the moments when a panic attack is happening, the danger is real to me.  Logic doesn’t stop the fear.  Intellectual reasoning doesn’t stop the fear.  Being impatient with the person doesn’t stop the fear. The only way to stop the fear is to be believed and validated and gently helped through grounding techniques like breathing (or whatever the person finds helpful).  Or when it’s really bad, just holding space for the person until the panic attack ends.

In those moments of panic, telling someone to “just calm down” is like telling a person who uses a wheel chair to “just walk.”  In those moments of panic, PTSD is a disability.  It’s a real physical and physiological reaction based on experienced trauma that has changed a person’s brain.  Just as a wheel chair can help some folks with physical limitations get around,  grounding skills can be a vehicle to help someone with PTSD get around.  Without these skills and coping techniques many things just aren’t accessible or possible.

Someone having a panic attack or flashbacks isn’t doing it on purpose.  They aren’t misbehaving.  They aren’t lazy or controlling or seeking attention.  Their brain is literally misfiring.  The person is experiencing a safe situation as an extremely dangerous one.  If the panic attack and flashbacks are happening at the same time, the person might not be fully present in the moment, they might be in the past or mentally re-experiencing the time of the original trauma or abuse.

A lot of the time PTSD is an invisible disability.   A lot of the time when I tell people I’m not okay or I’m struggling it’s not visible on the outside.

Panic attacks can be visible or invisible.  For me the scariest ones are the visible ones, where I know I’m acting erratically, because then I feel shame AND panic.  These scary ones are most likely to happen when I’ve missed too much sleep and when I’ve been ignoring early warning signs and pushed myself too far.

Another thing about panic attacks and flashbacks is that when you have them, you start to be afraid of having them again.  I’ve learned to live with flashbacks and anxiety, but when I have severe panic attacks with flashbacks the physiological hyper arousal can take 5-7 days to fully diminish.

If someone you know experiences flashbacks or panic attacks, a compassionate response can be extremely beneficial.  I know it’s hard to be patient all the time.  Nobody is perfect, but your response in these moments of high anxiety can make all the difference.  Even if it doesn’t fully relieve the anxiety, it can reduce the guilt and shame and fears of rejection.  Some people with PTSD, myself included, have a deeply held internal belief that they are freaks or crazy.  Treating someone compassionately can help counteract this negative internal PTSD dialogue.

I’m going to bed.  Hopefully I can sleep this off.

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Medication Fog.

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For whatever reason, my migraines have been out of control the past few weeks.  It’s been incredibly frustrating and painful.  I started seeing a neurologist about 9 months ago and have been getting nerve block injections which had been significantly reducing my number of severe pain days per month.  I was really pleased.  The neurologist is a great doctor, he believes me, doesn’t treat me like a drug seeking addict, and the treatment he offered was helping.  A rare positive medical experience for me.

This month the pain came back with a vengeance.  Last Monday, I came home from work and cried for over an hour.  I took my emergency codeine pill to take the edge off the pain for a few hours and it made me feel a pleasant sort of relaxed high.  Taking any type of medication is always risky for me, because what will relax me one day could agitate me another day.  Anything that has the potential to be psychoactive can cause unwanted adverse effects.  I don’t like feeling high and I if I use substances it’s in an attempt to feel normal.

Tuesday by the end of the work day I wasn’t feeling well.  The pain was terrible, my heart was racing, I felt weak and dizzy and dehydrated.  I had pain at the base of my neck which was new for me.  Normally my migraines are around the supra orbital nerve and focused behind my right eye, blurring the vision there and causing visual distortions.  To be honest, I was a bit scared I might be having a stroke.  Often by the 3-5 day mark of a severe migraine I begin to worry that something is really wrong, it seems hard to believe that SO much pain and so many strange symptoms are caused by “just” a migraine.

I was afraid and a bit desperate for the pain to stop so I drove myself to the ER.  I have a lot of trauma around the medical system (see earlier posts in this blog) and I was pretty reluctant to seek care at the hospital.  At triage my file was marked as emergent (I think they were worried about stroke too!), and I didn’t wait too long before seeing a doctor.  Luckily, the doctor reassured me that there wasn’t likely anything more serious going on, “just” a bad migraine.  He offered some IV medication and IV fluids because my heart rate was really too high.  I was relieved.  He believed me.  He didn’t treat me badly.    The nurse came to start the IV and I figured things would be pretty much okay from there.

I was wrong.

About 5 minutes after the IV medication ran through, I got suddenly hot.  I had an intense sense of panic and agitation and I knew I had to leave.  I couldn’t really think clearly.  My IV was attached to the ceiling and I couldn’t walk around.  I knew intellectually I could ring the bell and a nurse would come and probably unhook the IV or move it onto an IV pole so I could walk around.  But in my panicked mind, I became triggered to times I had been held against my will in hospital.  I started thinking that maybe the nurse wouldn’t let me leave, or that she’d make me wait for the doctor and that I’d flip out.  Then she’d know I was completely panicky and wouldn’t allow me to leave.  I was afraid.  I pulled out the IV and I ran away.  I fled.  I just left the ER and didn’t look back.

That was a rough night.  I was scared they would send the police after me so I got a friend to call the ER to explain that I’d left due to a panic attack.  It took a full day for all the anxiety symptoms to resolve.

And the migraine was back within 3 hours!

Two days later I saw my neurologist for another nerve block.  He told me that severe anxiety and agitation is a side effect of one of the IV medications in about 2% of people.  He told me not to take that medication again.  No shit!  I was angry that the doctor at the hospital hadn’t informed me that there could be potential psychoactive side effects. I would not have consented to the treatment as I know that I’m extremely sensitive to this type of adverse effect.  I’ve experienced versions of the same from SSRIs and from anti-anxiety medications.

My neurologist wants me back on another medication that can control migraines.  It’s called topamax and it’s one I’ve taken before.  I reluctantly agreed because it can also help with some of the other chronic pain I have which might be fibromyalgia.  The only problem with this medication is that it causes a lot of side effects, especially at the beginning.

My body feels like a toxic soup of drugs.  I have a hard time processing it all.  And I still have a headache.

The side effects when starting medications that cross into the brain can be triggering for me.  Not only do I feel dizzy, nauseous, off balance, foggy and exhausted, it also brings me back to times in my life when I was taking high doses of psychiatric meds.  It brings me back to times I overdosed on them.  It brings me back to the nights where I was sexually assaulted.  When I woke up, drugged, half asleep to find him touching me.  Fighting to stay awake, but the drugs dragging me back into sleep.  The feelings of confusion between my nightmares and what was really happening to me.  I don’t like that feeling.

So the side effects and adverse effects aren’t just unpleasant.  They aren’t just an annoyance.  They don’t just impact my ability to function smoothly at work.   They are frightening and they remind me of being completely unable to control being abused.  Being helpless, frozen, confused and afraid. They remind me of not having control over my body and not having the capacity to consent.

So if I’m complaining about adjusting to this medication or if I seem not quite myself.  It’s more than just a bit of dizziness.  It’s a lot of vulnerability and processing not feeling in control of my own body, both the pain in the present and the abuse in the past.   It’s all interconnected.

Firsts.

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<trigger warning for graphic descriptions of self harm and eating disorder>

I’ve been thinking a lot about the “firsts” of my mental illnesses.  We all have memories of the first time we did certain things or had certain experiences, but for people who have chronic mental health struggles over a number of years, not all “firsts” are positive memories to celebrate.

When I was experiencing my “firsts” of mental illness I was a teenager.  I was 15-17 years old and I didn’t have any idea that my experiences were those of specific mental illness, let alone what those mental illnesses might be.  I thought that I was going crazy.  I thought I was the only one.  I was afraid to tell others what I was experiencing internally.  Until I was diagnosed with PTSD when I was 20 years old, most of my “firsts” made little sense to me.

The first time I experienced what would become anorexia I was about 16 years old.  I’ve written about it in another blog post.  I was physically sick and hadn’t eaten for a few days.  I felt mostly better and wanted to go to school.  I remember my mother telling me I had to eat something if I was going to school.  I took a granola bar and started walking down the street to meet my boyfriend at the time and to catch the bus.  I remember feeling light, empty and powerful.  I remember feeling the sense of white, blank emptiness that I now associate with disassociation.  I felt like I could take on the world.  I felt like I could survive without food and that I’d actually be more powerful.  I loved that feeling and I chased after it in various forms for the next 20 years.  I believe this moment is the one I chose anorexia as a coping technique for the sexual and emotional abuse I was living with.  At that time I wouldn’t have identified it as an eating disorder, nor would I have identified my relationship as sexually and emotionally abusive.  It was just a feeling I had, of realizing that disassociation was more comfortable than pain.

I remember the first and one of the few times I tried (unsuccessfully) to purge after panicking about eating.  This I described in another blog post.  I remember crying and sitting shaking on the floor of the downtown public library.  My crime?  Eating a whole cookie rather than half of one.  I remember I had been reading books about eating disorders, secretly, trying to figure out what the heck was going on.

I remember my first panic attack.  I was in Grade 12, 17 years old and extremely ill from anorexia.  I was attending school despite the fact that my weight was well under 100 pounds at close to 5’9″.  I remember feeling driven.  I remember feeling an intensity of moving forward that wouldn’t allow me to slow down or calm down.  I had to keep “doing” and trying to be perfect at everything.  I had to follow all my rules or something terrible would happen.  I remember there was one day I had a math test.  I believe it was Grade 12 Calculus or some other horrible subject.  I had been doing well in school despite my illness.  But that day somehow my brain just wouldn’t work.  I remember sitting in the classroom, the desks were arranged in rows, one in front of the other with the blackboard at the front.  I remember all the numbers and letters swimming around on the paper.  I couldn’t breathe.  I couldn’t think of how to solve the problems because everything was spinning and I felt like I was being crushed.  I felt nauseous and I realized that I was about to cry.  I remember bolting out of the room and into a stall in the girls bathroom.  I remember sitting there crying, shaking and feeling terribly upset that I couldn’t do the test.  My thoughts were racing around and I just wanted to go home.  I remember another student from the class coming in to check on me (it was a male teacher).  I remember being somehow glad she was there even though I was embarrassed.  I made up some excuse about being sick and not being able to write the test.  I think I went home.  I wouldn’t have known at the time that it was a panic attack, but it was and it was probably related to extreme lack of nutrition and just pushing myself too hard on no fuel.

I remember the first time I cut myself as a coping technique for stress.  I was about 18 years old.  I had just started taking SSRI medication for depression and anxiety after about 2 years of fighting with my parents and my doctors.  I never wanted to take medication.  I think deeply and instinctively I must have known that my mental health problems were situational, but that knowledge was too terrifying to face, so I blocked it out.  The first time I engaged in cutting I  used a pair of scissors that I kept in my bedroom.  I used to make just one small cut.  I would do it once a week in the exact same place, just under where the band of my watch lay.  So I could hide it carefully.  It was ritualistic, very controlled.  I don’t remember exactly why I started doing this.  It became part of my routine as I gained weight and somewhat normalized my eating behaviour. I needed something else to help block out the memories of the abuse.

I remember the first time I considered suicide.  I was probably about 17 years old, but I might have been 18.  I remember being at a party at a friend’s house.  Radiohead OKComputer was playing in the background.  Music I always associate with the “saddest of the sad” times.  It was raining outside.  I remember sitting on the couch looking out the back sliding door.  It was dark outside, evening.  The rain was falling really hard and there was thunder and lighting. I felt like I was in a trance.  Looking back I realize this was also an example of disassociation.  I remember feeling incredibly alone and disconnected. I was AT the party but not part of it.  I remember being at home that evening.  My bathroom had green tiles.  Small square tiles with white grout.  I remember just sitting there staring at my razor.  Thinking about cutting myself, thinking about dying and ending my life by opening up my veins.  I just sat there for a long time thinking about it.  The images of the green tiles and the emptiness of that moment are burned into my memory.

I remember my first flashback.  I was 18.5 and with my first love, my first real connection after the abuse and the severe anorexia.  I remember we were in my bedroom and we were kissing.  It was consensual and I wanted to do it.  He was lying on top of me. I think he might have been about to unbutton a piece of my clothing or something like that.  Suddenly I was crying and shaking and it wasn’t him there.  It was my ex boyfriend, who had so many times taken off or unbuttoned my clothing when I’d clearly said now.  It was him on top of me and I was afraid.  I had no idea what a flashback was, I didn’t know I had PTSD.  I just had an intense physical reaction to what was happening.  My boyfriend stopped immediately.  I remember him leaving the room briefly to give me space.  I remember feeling scared and embarrassed.  I don’t really remember the explanation I gave to him.  Some of my memories are less clear, but I think over time I had told him that my last relationship had been difficult.  I don’t think I fully understood myself at that time that it had been abusive, and that this type of reaction was a normal one for survivors.

I remember the first time I cut myself deeply enough to need stitches.  I was 20.  I was at university.  I remember buying the craft knife at the university book store. I remember walking home.   There was  a bridge on the campus and for months I thought about jumping off it every day.  I knew that I was going to cut deeply.  It was planned and premeditated.  I remember disassociating and thinking only about the injuring.  I remember wanted to make sure it was deep enough to need stitches.  I remember walking to the hospital which was on the campus.  I walked across a field to get there.  It was May or June.  I remember the doctor stitching up the wound.  It was a medical student and I remember feeling afraid.  I remember the resident coming to check the work and commenting that the stitches were incorrectly done.  I remember wondering why the resident didn’t fix them, but I assumed that because the wound was self inflicted they thought I didn’t care about scars.  In the end that wound healed badly and caused me chronic pain until it was fixed about 7 years later by a plastic surgeon at that same hospital.   I remember feeling nothing.  I remember feeling nothing about the injury and having no emotional or physical reaction until the day I went to the health clinic to have the stitches removed. I fainted when the doctor took them out.  My body felt the trauma suddenly and all at once the disassociate wasn’t there.   From then on I always took my own stitches out so I could control the process and do it in a way that I would not feel as much pain.  The ritual of the whole thing was an important part of the process of disassociation for me.

It’s a sad list.  Really sad.  Because some of these firsts are clearly in my mind that pleasant memories I would like to remember.  The way that PTSD stores traumatic memories and erases positive ones is deeply frustrating.  Because the long term consequence of disassociation is memory loss, and rarely losing the memories I wish would disappear.

Picture was drawn in September 1999

 

 

 

Internalized Stigma.

 

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Stigma causes me to make terrible choices.  Internalized stigma is dangerous to my health.  This is what I learned over the past few weeks.

Why do I feel so many complicated feelings about taking an anti-psychotic medication, but completely different feelings about taking arthritis medication?  The answer is internalized stigma.

Mental health stigma has taught me to be ashamed that I take psychiatric medication.  Internalized stigma causes me to think that I shouldn’t take the medication, that I should try to stop taking it as soon as possible, that I’m weak and somehow not good enough because I need medication to stay functional.  Basically, stigma lies.

Recently I started an alternative treatment which was helping me to sleep.  Because I was able to fall asleep, I decided to reduce my anti-psychotic medication.  I don’t need this!  I can function without it!  I’ll be fine as long as I’m still sleeping!  I feel okay!  What could go wrong?

As it turns out, a lot could go wrong.

Within a week of reducing my prescription medication, I was having multiple panic attacks a day, having paranoid thoughts, thinking that I was seeing my ex everywhere, afraid to leave the house and almost impulsively quit my job!

I was physically sick, dealing with a lot of triggers and somehow I thought it was going to be absolutely fine to reduce my psych meds!

I’m going to blame this on stigma.

I’m also going to blame stigma for how long it took me to realize that the change in medication was directly linked to my crisis state.

I mentioned it to my psychiatrist over the phone.  We talk very infrequently since I’ve been stable for the past few  years.  He told me to take the medication.  He told me that I have so much going on and so much stress that I don’t need to justify to anyone that I need the medication.  He said, just take it.  Just take it and don’t worry about it.

I thought about it and I realized he was right.  Why was I fighting so hard to reduce the dose of a medication that wasn’t causing me terrible side effects and, in fact, was reducing some of the most unpleasant PTSD symptoms (panic, paranoia, seeing things as a result of flashbacks)?  Why was  I judging myself so harshly?  Why was it more important to reduce the medication and not be “dependent” than it was to keep my job?

The answer was that it wasn’t more important.  That I didn’t need to judge myself.  That I needed the medication to keep the symptoms at bay.  Yes, the anti-psychotic medication (as it’s name implies) was ACTUALLY keeping me functional and not on the edge of psychosis!

I started on the higher dose that night.  Within 2 days I was back at work, within 4 days the panic attacks were reduced and almost back to “normal” levels.  Within a week, I’m feeling more hopeful and less terrified.

These pills help me.

Yes, I’ve had horrific experiences with psychiatry and psychiatric medications.  Yes, some of these drugs have made me worse and almost killed me.  Yes, there is a social stigma associated with anti-psychotic drugs.

But I’m going to work on not internalizing this stigma.  I’m going to work on accepting what is.  Accepting my current limitations.  Accepting that PTSD is a brain injury and it’s logical to take medication if it helps balance things out.

So next time I start talking about decreasing my medication, please remind me to re-read this post.  Please remind me that my health is more important than stigma.  That I’d rather be functioning and medicated, than in crisis and able to say that I don’t take any medication!  Remind me that going off my medication is NOT a good idea right now.  And maybe be gentle with yourself too…do what you need for your recovery.  Do what you need and don’t let judgment (by self or others) get in your way.  You are the expert in  your own healing.  Trust that.

 

International Women’s Day

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There was a call today for “a day without women” as a protest against President He Who Shall Not Be Named.  Women were encouraged to stay home from work or to wear red in protest.  It’s also International Women’s Day.

I decided to wear red, but I didn’t stay home from work.  I challenged the patriarchy by going to work today.  Helping women.  It was important for me to go to work today, because I’ve been struggling a LOT the past few weeks. Last week I was tempted to quit my job, and just accept that I’m not “able” enough to pass as normal, not “able” enough to continue working, too sick to keep pushing through.

But I realize that the patriarchy wants nothing more than for me to fail.  My abuser wants me to fail, I think he wants me to crash and burn and commit suicide.

So for me going to work today was an act of defiance and resilience.  It was me overcoming the panic attacks as I got ready, left the house and drove to work.  It was me ignoring the negative self talk which was telling me that everyone hated me and that I should just quit.  It was me saying that I won’t give up, I won’t give the system the satisfaction of seeing me fail.

Failure isn’t an option.  I have to be “well enough” and “able” enough to keep going forward.  I need to do it for my children and for people who are depending on me.  I know I could be replaceable at work, but my kids only have one mother.  So I’ve decided to take better care of myself, to rest and to try to move at a pace that is sustainable and won’t exhaust me to the point of panic and wanting to quit my job.   I’m going to do the best I can, but that best might not be what others are able to do.  Right now, I have to do what I am capable of, what I am able to, and stop judging myself against standards I’m not always able to meet.

So for International Women’s Day, I left the house.  I battled panic attacks but I did not let them stop me.  I tried to focus on my ability rather than my DIS-ability.  I did my best and for today, maybe that was good enough.

Pin featured in photo by Rachael House http://www.rachaelhouse.com

 

Not really accommodating.

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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.