You need a lot of energy to be sick.


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.





This will be a short post because I’ll be heading back to bed shortly.

Migraines and other chronic pain issues seem to overlap frequently with PTSD.

My migraines are genetic and heavily hormone related. I also have certain food triggers and stress is a factor, especially in the severity and duration of the migraine.

Basically for 10-14 days of the month my migraine threshold is lowered due to hormonal changes.  If during that time I also have a high amount of stress, I will be more likely to get severe migraines that last for multiple days without relief.  If I also eat certain things like caffeine, chocolate, red food dyes and artificial flavours or colours during that time…well…you get the idea.  It’s not a pretty picture.

If you have never experienced a migraine consider yourself lucky.  If you do live with migraines, you have my sympathy.

For me, migraines are much more than “just a headache.”  I get visual distortions and blurry vision in my right eye.  This makes it difficult to drive and difficult to focus.  I get a fog in my brain which makes it hard to think clearly (probably due to the severe pain).  I often get nausea and occasionally in the past even vomiting.  I become extremely sensitive to smells and the smells make me more nauseous and make the pain worse.  The worst smells are perfumes, peeling oranges, and coconut scented lotions or air freshners.  A random collection of scents, but things I can’t tolerate during a migraine.  Bright lights hurt my eyes and cause me to squint.  Loud noises and even vibrations will cause increased pain and sensory reactions.  During some migraines I also experience a lot of dizziness and sometimes shaking or general feelings of weakness.

But I don’t look sick and this happens on a regular basis so I can’t just put my life on hold, take day off or stop caring for my kids.  Sometimes I have to leave work early or ask for help with the kids, but the majority of the time I just keep on going.

I have had trouble getting treatment for my migraines for various reasons.  One of them is that because of my scars and my mental health history doctors don’t believe me.  They won’t prescribe me narcotics, even though pure codeine does help me with a severe migraine.  I’m always afraid to go to Emerg for pain relief because sometimes I will be believed and treated and other times ignored as a “drug seeker.”

The intersection between chronic pain and mental health stigma is real.  I also have a less common form of arthritis which took years to be properly diagnosed and treated because doctors blamed the pain on my depression and eating disorder.  They didn’t seem to understand that it is possible to have a physical and mental health problem simultaneously.

When my migraines are bad I know that I need to get a referral to a neurologist and explore other treatment options.  But when they are bad I have no energy to get this done.  When I’m feeling better I go into avoidance mode due to my fears of facing discrimination when seeking health care.  It’s a vicious cycle resulting in more pain because I don’t have a doctor following this.

Today I’ve spent quite a few hours lying in bed with ice on the back of my neck, the room spinning whenever I open my eyes.  It’s discouraging.  I have things I want to do, I have plans, I have work…but my body is saying NO! and I am forced to listen.

People with chronic pain aren’t lazy.  They don’t want to be sick or to need to slow down.  People with chronic pain are doing the best they can and even if their limitations are invisible they are valid.

Please don’t say “you don’t look sick” to anyone ever again.  You never know what battles people are facing (physically or mentally).  As with surviving trauma, sometimes the most helpful thing to hear about my chronic pain is “I believe you. How can I help?