disability

Living Outside the Binary.

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There have been an enormous number of changes in my life over the past 3 months.  I haven’t been blogging as much, but I hope to create some new posts about those changes soon.

I’ve been reflecting a great deal recently on how much society wants to squish people into binary boxes and categories.  Either/or.  Society doesn’t promote the shades of grey, the spectrum, the people living at the intersections of multiple gradient scales and who do not fix neatly into categories.

It’s quite difficult at times, being a person who doesn’t identify with many binary categories.   I sometimes feel invisible, different, crazy, or like my identities are not real or valid.  In some situations, I don’t even feel safe or comfortable challenging the binary norms which are coercively placed on me.

In terms of sexual orientation,  I’m non-binary.  I identify as queer, which means I’m not exclusively heterosexual or gay.  I’m open to relationships and dating with people of any gender.  I don’t fit neatly into a box.

In terms of gender identity, I’m non-binary.  I identify as genderqueer, which means I do not feel exclusively like a man or woman, but something else.   A different place on a spectrum, and outside the realm of female or male

In terms of sexuality, I’m non-binary.  I identify as demisexual, which means I’m on the asexual spectrum.  Not entirely interested in sex, but not completely disinterested in it either.

In terms of my health/disability status, I’m non-binary.  I identify as having both physical and mental health disabilities.  But I don’t “look sick” and I am extremely “high functioning” despite the level of symptoms I experience daily.  I’m able to work, but I don’t always have the energy to do all the things.  Some days I feel pretty good and others I feel barely functional.

The reality is, I think a huge number of people identify as non-binary in some ways.  Maybe you haven’t explicitly thought of it this way, but very few people exist solely in all the normative, expected boxes and categories.  No person has just one single identity.  Life happens at the intersections of our identities.

I’ve experienced some level of not being believed or validated for my identities.  I’ve felt not queer enough to fit in with gay people, but not straight enough to exist comfortable in heteronormative spaces.   I feel too feminine to be non-binary.  I feel like I’m “lazy” if my symptoms cause me to struggle on a given day.  I feel like I SHOULD be something very specific and it’s definitely not what I am.

The worst part of it is how I don’t consistently believe and validate myself.  Internalized oppression is something I struggle with constantly.  I tell myself that I’m not “queer enough” or that I don’t “look non-binary enough.”  I tell myself that I’m not functioning well enough to be normal, but I’m way too “able” to identify as disabled.  I put myself down.  I tell myself I don’t belong. I tell myself that folks won’t believe me.  I tell myself that one day I’ll be found out, and that others think I’m a fake or a fraud, or lying to get attention or to gain an advantage.

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Internalized oppression leads me to gaslight myself.  Internalized oppression means I don’t often accept myself.  Some of the worst pressures to fix into the neat clean boxes of normal society comes from my own internal critic!

I don’t believe in binary systems.  I don’t believe the messages of ableism, homophobia, transphobia and patriarchy.   On one level I don’t believe them or believe in them, and yet I put so much pressure on myself to “pass” as “normal” when I don’t even know what normal means.

I don’t actually want to be normal.  I want to be myself.  I want to be accepted as the person I am.   On one hand, I love the fact that I’m diverse and have experiences that can exist on a rainbow spectrum, rather than in black and white boxes.  But at the same time, I feel pressure to confirm, to choose, to fit in, to pick sides.

I’m not going to fit neatly into boxes.  It’s not possible.  I would have to deny so many aspects of myself that I wouldn’t be me.  I would have to compromise my own deeply held truths, just to be fully seen by society as valid.  I reject that option.

Instead, I’m creating communities and groups of friends who do accept me as I am.  People who do see me as valid, just the way I am.  People who aren’t trying to place me into categories that don’t fit, like uncomfortable outgrown clothing.

The spectrum is beautiful.  I like to think this is part of the symbolism behind the rainbow pride flag.  We are all part of a spectrum, like the light spectrum which creates a beautiful rainbow. Without each individual colour, the spectrum would be incomplete and neither the bright light or the rainbow would exist.  Spectrums are all around us and within us.

Embrace the non-binary.  Embrace the intersections.  They are beautiful and valid.

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You need a lot of energy to be sick.

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Another stereotype or stigma that I’d like to debunk right now is that people living with disability or chronic illness are lazy.  That they have SO much free time and can “do whatever they want” because they are unemployed.  We’ve all heard versions of this abelist stereotype.

It’s just not true.  People living with chronic health issues are as varied and different as people who are well, healthy, neurotypical or able bodied.  They are not lazy.  Being disabled is not a lifestyle choice.  Some people with disabilities are able work/volunteer/attend school and some are not.  Some have varying abilities depending on symptoms on different days.  Some people (like me) are “high functioning” (I HATE this term) and work full time, parent, take care of a house all while living with a high level of chronic pain and various chronic symptoms of mental illness.

But whether you are working or not, raising kids or not, volunteering or not, on social assistance or disability payments or not…I can say with 100% certain that being chronically ill is a lot of work.  I’d even say that it’s a full time job.  So we aren’t lazy, we are warriors.   Our work just isn’t valued by society, and a lot of it is invisible labor just to survive.

Please don’t perpetuate this stigma.  And please trust that each individual person knows what they can and cannot do.  If someone with a chronic illness is not working/volunteering/attending school it’s probably because their symptoms are too severe and they are not currently able.  Or maybe their workplace/school is not accessible for someone with their particular health issue.

It’s NOT because they a) don’t want to, b) aren’t trying hard enough, or c) are lazy.

Tonight, I have almost no spoons.  I drifted through the day, feeling foggy and having trouble concentrating.  I crashed on the couch and struggled to get up again.  I feel mentally and physically exhausted.   I didn’t run a marathon today, I didn’t work out…but I DID expend a great deal of energy coping with my health.

Before work I had a doctors appointment.  It was a new doctor, so there was stress and anxiety last night and this morning.  I got test results that weren’t what I was hoping.  I got requisitions for blood work.  I booked two follow up appointments.

Then I went to work.  Tried to focus, tried to get things done.  Took a break, got the blood work completed.  Went back to work for another hour.  Left at 3:30pm for a counseling appointment.

I see my counselor every 2-3 weeks.  I’d like to see her more often but it’s difficult to fit in around my other appointments, my work schedule, my kids, kids activities and kids medical appointments.  Again, as I mentioned, people with chronic illnesses aren’t lazy.  We often have numerous medical appointments that need to be juggled and fit in around already busy schedules.

Counseling is work.

If you are a survivor of trauma, and your counselor is pushing you, even gently, in the direction of healing, counseling can be exhausting work.   At the end of the hour I feel incapable of more than curling up in the fetal position on her couch and crying.  But instead I drive home and carry on with my day.

My counselor has been fairly patient with me.  She’s realistic about the fact that I have a LOT of current external stress in my life and she’s let me talk about that.  But in the past 6 months she’s begun to push me to talk about my past, my childhood, my core beliefs, and my trauma.  She’s also started to call me out when I disassociate in the session as a way of coping with feelings, memories and flashbacks.

I like disassociating to cope with feelings, memories and flashbacks.

It’s kinda my thing.

Most people don’t even realize I’m doing it.  Even fewer people would point it out.  Nobody else would purposefully try to stop me from using it as a way of coping.  I’ve always thought of disassociating as a self preservation, self protection mechanism.  I always thought I was coping if I zoned out to make a flashback less intense or make it stop.  I was coping.  It helped me survive, but maybe now there are other options…

My counselor wants me to stay present.  She wants me to TALK ABOUT what’s happening for me.  She wants me to describe it.  Or at least she wants me to stay with her in the room while it’s happening.  It’s very uncomfortable.   “But I LIKE disassociating!”  I whine…  “But it works!” I attempt to convince her.

She reminds me that I’m not alone.  That she is there to help me out of the feelings, body  memories and sensations.  That I don’t need disassociation and that maybe by zoning out I’m not actually allowing myself the space I need to heal.  Maybe I’m just stuck in a constant space of just surviving.  Maybe disassociating is actually taking up an intense amount of spoons to maintain.  Maybe zoning out is zapping my energy.

Chronic complex PTSD is exhausting.  Chronic pain is exhausting.

But maybe, just maybe doing the work of counseling and trusting the process might help restore my energy in the long run.  It’s draining work at the moment just trying to convince myself to TRY to approach my healing without disassociation.

I might have many flaws, I know I am not lazy.   Neither are you.  Keep fighting that stigma and keep surviving and thriving.

 

 

Sick Days.

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I’ve been home sick the past few days and sick on and off for a while now. It’s really difficult sometimes to separate physical and mental health symptoms.  Everything is all blurred together and it’s hard to tell when to push myself harder and when to rest.  This past week has been an explosion of physical and mental health struggles that are creating a storm of symptoms and have forced me to (uncharacteristically) stay in bed.

I haven’t met very many people who understand the complex intertwined experience of having both physical and mental health issues simultaneously.   Most doctors aren’t very trauma informed and also struggle to validate that both physical and mental health issues can occur simultaneously, and be either linked, not linked or both linked AND not linked to each other!

One of the things I’ve been coping with in the past few weeks is a urinary tract infection.   Obviously, an infection is caused by bacteria and isn’t a mental health issue.  But I was also really triggered in the past few weeks and this made me extremely reluctant to seek medical care.  I was afraid to go to a walk-in clinic, afraid to see a doctor, afraid to be examined.  This was linked both to past trauma around the medical system AND generally high levels of panic and anxiety related to stress with my ex and my kids experiencing abuse.   Thus I waited for over a week to go to the doctor, by that time my symptoms were much worse and I felt pretty awful physically.

This is an example of how physical and mental health issues can be both separate and linked at the same time.  The infection itself was physical, but my avoidance of the doctor was mental health and trauma related.   Of course you might also argue that my high levels of stress and anxiety also generally lower my immune system and make it harder for me to fight off infections.

By the end of last week I was on antibiotics, but I also developed a sinus cold.  I had a migraine related to receiving a nerve block to treat the migraines, but the sinus congestion put pressure on the nerves that were being treated.   My anxiety was causing panic attacks and making me afraid to leave the house for fear of running into my ex.

Thus again, my high levels of stress probably didn’t help any of these physical issues that I was dealing with.

When someone has an infection, generally they are advised to rest.  But resting is difficult when you are also struggling with severe anxiety and panic attacks.  My head gets filled with worries about work and what I’m missing and what people think about me being away and creating all sorts of worries and fears, many of which are not realistic.

Anxiety causes me to feel like a failure.  It causes me to feel like making a mistake is a terrible thing which can’t be recovered from.  It causes me to feel like everyone around me hates me and thinks I’m doing a terrible job.  Or worse, they think I’m faking being sick to avoid responsibilities.  A lot of my irrational worries centre around feeling like nobody believes me and that nobody likes me.

Experiencing abuse, and extending periods of emotional abuse, as well as abuse within systems, has lead me to fear and avoid conflict of any kind.  I want everyone to be happy all the time.  I get very anxious when there are disagreements and I’ll often apologize even when I’m not sure I have done anything wrong.   I’ll do what I can to avoid conflict, because when interpersonal conflict levels are high around me, my anxiety levels feel unbearable.  Because ongoing interpersonal conflict is a trigger.  I try to keep people around me happy because I want to feel safe and BE safe.

Unfortunately, in the real world, conflict is unavoidable.  Disagreements are part of life.  As the saying goes, you can’t please everyone all the time.

But I want to!  I need a lot of reassurance from people around me that I’m doing an adequate job.  I need reassurance that conflict isn’t dangerous.  I need reassurance that people believe me, that they believe I experienced abuse, that they believe I’m trying my best.  I need reassurance so badly because my internal dialogue is so self critical and judgmental.

I know it’s not the responsibility of those around me to constantly reassure me.  I know I’m an adult and I have to take responsibility for my own feelings and fears.  The difficult part is that while I’m experiencing ongoing abuse and conflict which is outside of my control, my self esteem is constantly being eroded and challenged.  I need reassurance because I haven’t yet learned to fully believe and reassure myself.

I believe this is very common for survivors who have experienced long periods of gaslighting or complex emotional abuse.    It’s hard to build up a stable sense of self when you are being confused, beaten down and made to feel like you are crazy and nobody will believe you.

Survivors need a lot of patience.  Sometimes you might get frustrated with me.  Sometimes you might feel like I’m being unreasonable.  Sometimes you might not understand why I’m SO upset over something SO little.   Please remember that it’s not little to me.  My reaction could be related to feeling triggered and that trigger is making me feel like a failure.   If you have the energy and patience to reassure a survivor, please do so.  She might need to hear thousands of times that you believe her and that you don’t think she is crazy.

I need to hear it a thousand times.  Especially on weeks like these where I feel crazy, broken and like a failure.

Being physically and emotionally sick at the same time isn’t a lot of fun.  Taking sick days when you are struggling with severe anxiety and PTSD isn’t fun.  It’s not relaxing.  It’s not “a break.”

I guess sometimes we have to carry on, try to move forward, even if we don’t believe or have faith that everything will work out for the best.

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.

It’s rude to stare.

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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.