Well. Doesn’t that word seem Heavy and filled with more Meaning than it actually has?
Other people put more meaning on it that it actually has. Stigma like we are ‘lazy’ and ‘mooching off the system’ and ‘just don’t want to work’ and ‘most people on disability are just faking it’ (because we make SO much money, that makes so much bloody sense). Anyway, lot of negativity some people throw out there such that we feel like we don’t want the label.
Then there is meaning WE put on there it doesn’t have. Weak. Worthless. Useless to society. Meaningless. All these shameful things we definitely ARE NOT. That self-stigma can hurt us a lot when we are adapting to becoming disabled.
According to the dictionary Disabled means:
impaired or limited by a physical, mental, cognitive, or developmental condition : affected by disabilityMirriam-Webster
Yep. That is the Actual definition and that isn’t that horrific at all when you strip away the discrimination and stigma latched onto it.
According to the actual definition I have been disabled a very long time indeed. I have been limited physically since fibromyalgia and migraines were diagnosed when I was 20. Before that I wouldn’t say the pain limited me much… but it was there for sure. I crossed a line somewhere along the way from functionally disabled to non-functionally disabled that I ignored and paid a massive toll for it. And at no time did I accept or label myself disabled because of the negative stigmas people add onto the definition.
Would I have defined myself as disabled back then in my 20’s? No. Not at all. I was coping and felt I could manage my chronic illnesses and still have a decent quality of life and do the things I wanted. *insert laughter at my innocence*.
My definition of Disabled was always more Non-functional by Societies Rules. In other words, when I felt I could no longer function in the workplace and be a fully functional member of society with my chronic illness Then I would consider myself Disabled. And damned if that would happen.
The illusion of Functional
And for a very, very long time in the workforce I pretended to be functional. I pushed through the pain and forced myself to be what was perceived as functional even as it destroyed in quality of life, shrunk every aspect of my life, destroyed my mental and emotional well-being. At least I was ‘functional’ in the sense I could fake it some days. But of course I wasn’t. I took numerous short-term leaves and a few long-term ones. I missed too much work. When I was there I wasn’t really There (presenteeism), because the pain compromised my ability to function in so many ways.
That is Not the definition of functional. Or reliable. Or dependable. Or what an employer wants… so they try very hard to… discourage you to stay in various unpleasant ways.
I considered it madness. And torture. I became severely depressed. I think that is a inevitable result of pushing through the pain and exceeding your limits like that. And living in survival mode. You can’t live like that. Depression is a very normal response to that. With that tension something has to change. Something has to happen. And in my case I burned out. And I had a suicide attempt. I burned out and kept going, you see, because I felt trapped… and when you burn out and keep going and going, eventually you do not see options. You just want it all to end.
So… was I so Functional? No. But I pretended to be for a long, long time. And it nearly killed me.
Not a good way to define disability by if you are in denial of your own capacity to function or not, is it?
Functional by society’s standards is after all to fit into society no matter what and to push yourself no matter what. Screw well-being. Screw mental health. Just Do it. Suck it up. So my definition of disabled by society’s standards of ‘functional’ was massively flawed because society is massively flawed.
Okay, so my definition of Disabled was clearly flawed because we Pretend for work, people, society and we can be disabled at the same time as we are pretending to be more functional than we really are.
But Insurance Companies play a role. When I was on long term there is a point when you either continue on it or go back to work. This point is when they decide if you can do Any job and totally fine to go back to work (Because if you can do any job conceivable then clearly you are totally healthy), or long term disabled and not able to work. They sent a consultant to me. We talked. And they decided I was not disabled. I was ‘significantly improved’. And fine to returned to work. Not disabled.
Odd since I had no pain management and was suicidal. Because suicidal and no pain management with multiple health issues seems pretty disabled according to my doctor and psychologists at the time. Anyway, I went back to work. It did not work out well for me. I had another suicide attempt.
But you assume you must not meet the criteria of disabled if they Say you don’t. Surely they would know? So you must just have to suck it up… and push through the pain… and the cycle starts all over again. Until you shatter into a million pieces and someone has to put you back together again.
It was not a good situation. I do not blame them. They are not designed as a system for disabled people. They are designed for short term, get people back to work sort of deal. And Not pay when they can. It is how it works. We have to fight for anything else and a lot of us a are tired and don’t. With depression certainly I had no fight. Not any.
It wasn’t until I had chronic pain conditions (plural), depression, AND constant vertigo that I was Officially disabled by my insurance company after a long fight with them and also by CPP-D (disability in Canada) with no fight from them.
So Officially it seems you have to be extremely disabled in many ways to be considered disabled. I mean to the point of you cannot push through it, you cannot pretend to function, you cannot do work Period. At all. No way in hell. It just can’t happen. There is no debate. No matter what they say, you can’t, so you have to fight, because you have literally no options. You are unable to function on any regular schedule for any extended period of time. And in my case, couldn’t drive OR be in motion without getting much worse. So fighting was all I could do because I couldn’t fake it anymore… I couldn’t fake anything let alone any concept of ‘functional’. I was totally laid out. Now with meds, I have slices of functional, between periods of rest, some days. It varies. Some days laid out. Some days in the mornings I can do some of the things I love to do (like blog) between rest breaks) and that is worth a lot to me.
What I can say
- I was disabled before I thought I was
- I was disabled despite what my Insurance Company said
- I was disabled before I was Officially Disabled
- Then I was Officially Disabled
And when I was officially disabled then I called myself disabled. I felt only then could I use the word without any guilt or feeling like I was exaggerating or anything like that. I knew there would be stigma and there is but I also cannot deny that I am. I have accepted at this time in my life I am. It is just the way it is and people who cannot deal with that can suck it.
My perception of disabled
But the real fact is, I was for a very long time but I couldn’t allow myself to take ownership of the word. I could Not accept I had crossed that invisible line between functional with a chronic illness and chronically ill disabled. But, oh, I had a long time ago.
There had been a time when I had coped well and had lived within my limits and managed to go to school and achieve honours. And a that time I adjusted in various was in order to succeed. I paced and didn’t do all the activities my peers did. But I achieved all my goals. I wouldn’t have considered myself disabled at that time.
And then the line blurred because the fibromyalgia was not managed. The chronic migraine disease was not managed. And the pain load was high. It would have taken more effort to pace, cope, and adjust and that would have required limits that would have meant Not being able to work full-time. And I couldn’t accept that. I didn’t even acknowledge that as a possibility at the time. I had made the compromise of not continuing to get my PhD because my health was deteriorating so I wanted to have a career and nothing was going to stop me from that. I didn’t consider myself disabled… I believed my pain was simply Not Managed. And if it was I would be Fine. It never was. It is not to this day.
So I crossed that line into disabled and never thought I was. And never accepted it. Denied my limitations. And essentially ran myself to the ground as a result.
Until even I couldn’t deny it. Even my insurance company couldn’t deny it. The government couldn’t deny it. No one could deny it. And then, yeah, I am disabled.
So that is a long journey to accept a word isn’t it? It is just a word. But it is a LOADED word. It is loaded with stigma and discrimination. But you know I was discriminated against Anyway. I experienced stigma Anyway. It isn’t the Word that causes that. It is the fact we do not fit into society and they do not make space for us… and would rather make our lives hell that help us fit in. The word made no difference in how I was treated in the world. Might as well own it since it makes no difference in how you are treated with a chronic illness where you have issues functioning.