How has the stigma impacted you, and how have you fought it?

Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness.

There are many forms of stigma and I have faced a few of them with migraines and with fibromyalgia to be honest. More with FM really. But I will focus on work. I have to say the medical stigma is up there though.

I faced a lot of workplace issues with chronic migraines when my migraines were at their absolute worst. And I was young so I didn’t do much about it because I felt I couldn’t. The guilt of being ill and feeling somewhat that I deserved it, made me silent. We get a lot of self-stigma when we have been ill long enough. We hear it so Much, we Believe it.

I have been told and have had done by an employer in the past:

  • Told I was failing myself, my customers and my coworkers.
  • Was demoted.
  • Was given ultimatums and told I Would be demoted or else.
  • Was told I must come into work, regardless of pain, then told I couldn’t leave to even go to the ER. And she told other staff to not ‘let me go.’
  • I was told I couldn’t get accommodation because I didn’t have a ‘physical’ disability. One assumes they meant ‘visible’? But I have no clue what they meant.
  • Perhaps if I cut my hair I would have less migraines.
  • Clearly I was doing something to have so many migraines.
  • That if the economy turned I would be the first to be fired.

Anyway, after years of such comments and things I went from 15 migraines a month to daily, and I have to believe the stress from work was partly to blame for that. I also developed Major Depressive Disorder which wasn’t at all treated at the time because I denied it existed. I was trying to push through the pain to function, so I wouldn’t get fired. I was younger, naïve and equally frustrated by my pain and lack of treatment.

Employers get frustrated when you cannot function like you should. They don’t get that you are far more frustrated by it than they are. They don’t get that they cannot force you to function when you cannot and by forcing you to ‘push through the pain’ you will actually get much worse far faster. And if they had just helped you find solutions with your doctor you might have actually had a damn chance. It is like they think you are a child. That you are just lazy and don’t want to play today. And if they can just force you to, it will be all good. With absolutely no comprehension of the pain levels the person is dealing with and how that is affecting their quality of life and mood. It was truly a vile time. And one I do not remember fondly.

I feel sometimes companies just want to push the chronically ill out of their company. They don’t accommodate, in my experience. And they just… push them out. They don’t give any time for recovery. That is best case scenario in my experience. No accommodation. No time for recovery. Worst case, as I said, much worse. It is hard to say what a good case scenario would be. I haven’t really experienced what others have with a really good disability relationship and accommodation environment.

I have my migraine specs I wear for photophobia and I have yet to ask my manager if I can wear them at work. Because they are a dark migraine tint, specifically designed for photophobia. Because of past experience I feel it wouldn’t be approved and I just do not want to deal with that whole issue.

I believe, to be honest, it is because the expectation in society is on the person to cure themselves and not on society to accommodate disabilities. I remember reading somewhere where a great company in the tech industry had an employee coming back from disability leave. And they gave her the time to recover due to the stagnation of skills. And motivated her to get back into the flow. I feel this doesn’t happen in day to day life. They don’t consider skills stagnate, that your self-worth when you are on leave suffers, that things change when you are gone and that there is an adjustment period when you return. That there needs to be a certain level of motivation and encouragement going on as well as assistance to get employees back to full level of working order. I also believe in general every day life, they expect you to come back Cured. And Perfect. And Healthy. And how dare you come back with chronic pain that is difficult to manage still?

In general, I am stoic when it comes to pain. I smile. I laugh. You can’t see it. I won’t show it unless it is a 9. I don’t expect co-workers or my employer to see it or understand it. Because they can’t. I get that. And I hide it exceptionally well. It comes out it errors. In sick days, when the pain or symptoms are too severe. And they can see the improvement in the lack of those sick days and lack of errors. But there is pain. There will Always be pain. And I doubt anyone I work with actually comprehends that. They don’t know me well enough at this particular location to know that I am quite literally always in pain every moment of the day, it is just a variation of flavors.

My expectations from a workplace now, are substantially low. I expect nothing in the way of accommodation. What I do expect, is stigma. I expect bias. I expect that if the economy were to turn, I’d be the first to be laid off because I am a liability. And I expect it. Like I said, I don’t think companies are fond of the chronically ill. I don’t think they work hard to keep us. If anything, I think they might even go out of their way to encourage us to leave. If they wonder why we hide our illnesses so very well behind a mask of wellbeing you should look no father than the sigma we face if we should ever look weak.

I have in the past tried to raise awareness about this disease, but frankly, it doesn’t quite seem to make one bit of difference. The only difference I have seen in my workplace experience was differences I have made in my treatment and thank goodness for those changes. Kudos to companies with excellent workplace accommodation, sufficient recovery time from leave, proper disability awareness and sufficient understanding of the fluctuating needs of chronically ill employees.

A long time ago I experienced some excellent workplace environments and accommodation that worked quite well with my migraines and chronic pain. There can be a balance between work and chronic pain. There doesn’t have to be this tension and conflict. And almost fear. Well, yes, fear. You shouldn’t have to fear being unwell. Fear for your job when you are trying to get better. Fear for what will happen when you have to go on leave and what will happen when you return. And the stress of that shouldn’t make you sicker.

That particular manager simply wasn’t skilled at handling a chronically ill employee with chronic pain that got complicated at that time. She handled it poorly. It made things significantly worse. I should have done something about it, but I, like her, had no idea what to do.

96% of all chronic illness is invisible(4).jpg


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