Strong

I am strong,for you.I am strong,for others.But when I am alone,I let my walls down.A feel all that suffering I hide.And know(2).png

People say that people with disabilities are so strong to endure what they do.

And with chronic pain I often get asked ‘How do you do it? Handle that pain all the time?’

To the first, calling is strong is that sort of positive labeling that we often see that comes with inspiration porn. We are ‘strong’ and ‘brave’. And there is no disability except a bad attitude. In fact, we are, just us. We are not here for anyone’s inspiration. We are just like anyone else. We have good days and bad days. We cope well and sometimes we struggle. We are just people.

To the second, how I do it. Well that isn’t strength at all. It is necessity. A grim, determined necessity. Because I must. The other option, of not, well that occurs to me as well because it isn’t easy. Maybe it is an acquired strength. But it doesn’t feel like it. Feels like a strength wrapped in a weakness. Because it is a constant exhausting battle. And I am tired. But none of us can doubt we learn to cope. We develop skills as we go along. And I cope with more pain now than I ever did. Smack this pain that I have now into my 18 year old self all at once and that old me would have got to the ER thinking she was dying… she would not be used to This pain. We get used to a baseline pain. But we are limited by it as well. Very limited by it. Is that strength that we endure it or acclimation to our baseline and pure necessity we survive the high pain.

Strength though can be talked about in other ways when it comes to me and my chronic pain. And that is as a facade. As a mask. Appearing strong because I don’t want to seem weak. Pushing through the pain because I don’t want to seem weak. Hiding my depression because I don’t want to seem weak. Partly this is my own personality. I am reserved and I don’t emote much when it comes to these sorts of things I consider to be very personal. And partly it is self-stigma… that somewhere along the line I decided mental illness is a weakness and that not coping with pain is a weakness. I know I got a lot of that from experience with doctor stigma. But the rest comes from society. So I self-stigmatize. Stigma doesn’t always come from the outside you see. We experience it all our lives, then we internalize it. When someone implies I should feel guilty for missing work and letting down my co-workers on a day I was completely non-functional from pain… I feel guilty like I should be ashamed of being ill. Why is that? I could Not function. I could not drive. I could not move. Yet… shame and guilt. Because someone implied I should and I internalized that stigma and felt it.

So I don’t feel strong. I feel i present a really strong mask. A fine facade. And beneath that I struggle a lot to maintain. I have this thing. This quirk. I don’t like people to know how much I suffer. I don’t communicate it. I don’t talk about it. And I hide it well. Because I think of it as a weakness to show emotion. And a weakness to not be able to cope. And a weakness to show pain. And I am very uncomfortable with emotional conversations. I avoid them like the plague. Telling someone about what is really like to be like this day in and day out would let my emotions out. I have done it a few times and that is a few times too many. This very contained personality of mine is actually petty par the course for a INTP personality type. If you do the Myers-Briggs personality test. My type doesn’t do well with emotional conversations. But we do well with rational ones. I can talk about my pain abstractly and rationally. I can talk about research papers. I can discuss. But I won’t go to that emotional zone. The final reason I won’t aside from personality, being reserved, thinking it is a weakness… is I have a lot of emotion beneath the surface of my facade in the form of depression. I feel like if I open that up it would be like a floodgate and I don’t like the idea of losing control and breaking down. I can feel it sometimes, hovering, at the edges. Profound emotion. I would much rather think about it in my head and try to think through it than let that out.

So I am not strong. It is a mask I wear. It is self-stigma. It is just a way I present myself. The only strength I have is in the coping skills I have learned the hard way over the decades. The only strength I have is in choosing to fight rather than not.

physically-mentally-emotionally-it-seems-everypart-of-meis-brokenin-one-way-or-another

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Silent minority

 

My pain is a burning star in the night sky.

We are not alone. So many people suffer with chronic pain. The numbers are staggering. Billions. We are a pretty silent billions though.

 

feeling down

I often feel we are a silent minority. That no one wants to hear about our plight.

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.

—  -New Yorker, “What’s Wrong With Me?”

In the land of pain everyone will get used to it but me. It will always be fresh for me. Old news to everyone else. They tire of it. Other people do not want to hear about it. They want your functionality. They want you to pretend to be normal. To strive to be so, even when you have limitations they don’t seem to comprehend. They want you to push through the pain because isn’t it ‘always going to be there?’ They want you to deal with it. Suck it up, buttercup. And hide it. Smile. Be a good, functioning employee. A functioning member of society. Don’t complain about it.

The sense of isolation creeps up on you. Always striving to maintain and never quite succeeding. Always trying to cope with the pain. Think though it. Presenting a facade that is acceptable in public. It is exhausting. You wish people comprehended in the least little bit how difficult it was to get up, to move, to pretend to function to present that facade and get through a day. Just one day. To live a day at a time because that is all you can get through. Just day by day, hour by hour, minute by minute. If they only knew the sacrifices. The careers you had to give up. The ambition you can’t have. Because the pain simply will not permit it. Your very life lived in limitations, moderation and pacing. As best you can, because working saps so much pain tolerance and energy from you.

But in the land of pain… life is different. The rules are different. Life is different. In the real world, people do not see it.
Chronic pain sufferers kept silent and under-treated under new pain regulations.

And they want our silence. As the medical community obsessing about addiction such that they do not even seem to care about the quality of life of chronic pain patients… they don’t care to hear from those chronic pain patients. They are suddenly ‘difficult’ and ‘drug seekers’ and notes are put in their file. For speaking. For saying “I am suffering more than usual and I can’t handle it. It is exceeding my capacity to cope with.” Clearly… that should be ignored. Clearly it would be So Much Easier if we would just suffer silently. Under-medicated. With no quality of life. The pain exceeding our capacity to cope with it.

I have a pretty good medical team myself and opiates are not a viable option with chronic migraines. I have a slow release tramadol that isn’t causing rebounds, but any other would. It doesn’t work for chronic migraines, but mildly for FM. I have little that can be done for my migraines. So I suffer. When it comes to the regulations I speak more so for those in the States and in BC Canada who seriously are in need of opiate treatment and have been taken off completely due to this or dropped as patients because their doctor doesn’t want to ‘deal with a pain patient’ or had their dosage severely reduced. And they have no rights. No voice. They are not addicts. These laws were not designed for them. They are just being punished for them.

Nevertheless isn’t that what society wants? For us to not complain? Do they realize what no quality of life means? It tend to mean no work for one thing. No being productive. No capacity to do anything. To means an existence of survival mode. Just getting through the pain and nothing else. Dooming someone to that is cruel. It is ironic. There are far more chronic pain patients than there are addicts. Addicts will get their drug of choice whether these regulations exist or not and everyone knows it. So all the ones that will suffer are those that suffer quite enough already.

Social stigma #MHAM #CDNmigraine

Social Stigma increases the burden of living with #Migraine. #MHAM
Medical professionals

A social stigma can be the result upon a person or group from a perception or attribute, rightly or wrongly, of mental illness, physical disabilities, diseases, illegitimacy, sexual orientation, gender identity, skin color, nationality, ethnicity, religion (or lack thereof), or criminality. nobullying

 

 

Social stigma can be profound with migraines. There are a a lot of beliefs out there about migraines that still persist today. My personal favorite is that intelligent people get migraines… I can handle that one. My least favorite is that we are just lazy. Or it is just that we can’t handle stress. Or that it is a woman’s disease because we can’t handle stress. Or that we can’t cope with life well. People literally think those things. That we are lazy, stressed out woman that just can cope with life… so we get ‘migraines’.

Another is that we lie about it. Turns out lying about having a migraine to call in sick when you are not is a thing. People use it as an excuse because it is something that would knock you out one day, but you’d be fine the next. Perfect effing excuse they think. So when you call in with a migraine they thing ‘oh a “migraine”‘

For others it is the whole ‘It is just a headache’. Well, sweat-cheeks, if you ever get one you will tell the difference real fast.

I used to get stigma of ‘Your fine one day, then sick another’ Well no, I had a slightly treated migraine I could barely tolerate one day, and an acute untreatable migraine another.

Then I get but your smiling and laughing! You can’t be in that much pain. I actually can. Humor is my coping mechanism.

Shapiro polled 765 people online. All were U.S. residents, with an average age of 28. When presented with vignettes that described people with asthma, migraine, panic attack and epilepsy, the survey participants answered questions on a well-known test used to assess stigma towards illness.

The questionnaire, Shapiro explained, “just provides insight into how someone wants to be associated with someone else.” For instance, respondents told how likely they were to want to work with someone with one of the four conditions, and how comfortable they would be inviting them to a dinner party.

The lowest stigma score was for those with asthma. “What we found was the score for migraine versus epilepsy versus panic attack were quite close together and quite similar,” Shapiro said. WebMD

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Because of this stigmas people do not comprehend chronic migraines. How can someone have migraines more than 15 a month? How is it more than a headache? How can you Not Work with ‘just’ migraines. The stigma with co-workers is often that they do not want a co-worker with migraines. One who uses ‘excuses’ to miss days.

I want to a work training course in Toronto once and I heard some people talking about a co-worker with migraines in the most disparaging of ways. Claiming she had migraines ‘All the time’, but could work some days and not others. And how was it even possible to have migraines like that anyway. And who could even work with a migraine, that couldn’t be true. They said she was lazy and complaining, just trying to get out of work.

So I said to them that I had chronic migraines, daily. That it is in fact possible to have them all the time, because I do have them all the time. And that with medication you can decrease the intensity of some so you range in intensities. So sometimes I am a 9 and I can’t come to work. And sometimes I am a 7 and I can. I said there are tons of medications I have to be on, but I struggle to work and I miss too many days (I was full time at the time). They asked me other questions about how she was and if that was normal and I fielded every one of them. Sounded like they despised her because her migraines were not what they expected migraines to be Like. Not rare enough. Not stay at home hide under the covers migraines that happen occasionally and are decently easy to treat. I said to them they are not longer easy to treat when they get chronic and we no longer have the choice to sleep off every migraine once they are chronic… just the epic pain level ones where we cannot function are the ones we stay home for. We Have to function with other ones.

I have faced a lot of workplace stigma as well. Bosses that think I should be able to just push though the pain. If I came in one day with a migraine, I should be able to on another day. That if I am smiling I must not be in much pain, but we work in customer service so I developed a smile through the pain approach for a reason. That when I lost weight I must be feeling better. When I came off a leave of absence my boss assumed I was cured, that wasn’t a funny one at all.
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