Invisible disability awareness Uncategorized

Invisible Disabilities Week

Every one of my illnesses is invisible. From hypothyroidism to chronic pain. Even migraines, because they are chronic, are invisible. Less invisible when they are episodic, because you Do Not function with them normally. But you have to when they are chronic, so, they are invisible. Either way, looking at someone you cannot tell they get migraines, so they are an invisible disease. Same with fibromyalgia. You can’t see the pain. Oh, you can doubt the pain someone is in, that you can do, but certainly you cannot see it. You cannot know it. You cannot feel it. You have no comprehension of the experience of it.

This is not to say there isn’t a lot of stigma with visible disabilities, because there is. There is just a different sort with invisible disabilities and, obviously, we get the doubt factor as well. This you ‘cannot be that ill’ or ‘you cannot be in that much pain’ or ‘You must be faking’. A lot of times the existence of our Bad Days confuses people. How can you not function one day, and function the next? Like illnesses isn’t variable like that. Or like it isn’t hard to function on those in-between days. Like we don’t struggle just to Be presentable. Other things confuse people as well. Our moods. If we are smiling and happy… we must feel well. Our physical being. If we lose weight… we must be feeling better. Trust me, that one isn’t at all true since there are so very many reasons the chronically ill lose weight that are not ‘doing well.’ But skinny=healthy to many people. And we wonder why it is so very easy to hide how ill we feel from people. People just see the outside package. The smile, makeup, the presentation.

But there are those who to care to ask and notice. There are. I get genuine concern over my wellbeing from very good people. Just recently I had a bad migraine day at work. And I expressed that to a co-worker. Now usually, I wouldn’t but the pain was at that point where mentioning it just came out. And she said ‘You should go home,” and expressed worry. Told me more than once. But, of course, I can’t. A migraine for me is not cause to go home. Not even a bad one like that. It is, just a day. Just an unmanaged pain day. Which there are fewer than there was in my life than before, so who am I to complain? Well, I do, it isn’t fun. But a bad day, is just a bad day. But she cared that I was in pain and working. I didn’t want to tell her, this is my life, man, migraines just are my life. Thankfully that migraine ended this weekend and I am back down to ‘functional’ pain. Phew. Nevertheless, people do ask. People do notice. People do comment and care. Even my boss asks about my wellbeing from time to time. Because he is a good man and a good boss. He cares that my treatment is progressing in the right direction. As do I.

So it not as if we are invisible to the our Immediate world. Like I often say, Pain and Illness has a radius and it affects all those around us. We do touch all those around us in some way by being ill. By canceling plans. By not being able to make it for certain events we may have wanted to go to. Work may or may not be impacted depending on your work level, part-time, full-time, and where you are at with your illness, which always seems to fluctuate, or how responsive you are to treatment. You spouse is affected obviously, or loved ones. Impact goes all around.

What makes it invisible isn’t that they know, it is that they don’t KNOW. What I mean by that is no one knows the impact it has had on your entire life. Like the times when it was at its worst and you struggled just to get out of bed. When it was an issue to work at all and your finances crumbled. When you had to figure out if you could work at all and your doctor was saying that you really couldn’t unless Something changed. When your mood was effected. And that was at the worst. How about over the long term? People don’t get how exhausting it is. How difficult it is to compromise on your whole life. How all the things you wanted, you can’t have. How it is a real blow to the self-worth. Until you get some sort of semblance of a life back. And then you worry, always, you might lose That. And they often don’t know your illnesses affects you ALL the TIME. I know my work doesn’t know I have a migraine every day. Less intense ones, sure, but a migraine. Maybe bad nausea one day. Bad aura the next. Lose my hearing the next. Can’t communicate well the next. It is a disease even when I cope and manage the pain. I am very upfront about it being a disability. And no one knows I have fibromyalgia I don’t think. So that pain, well, that is something I just deal with on my own. It is functional pain aside from flares.

That is what makes it is invisible. Is the Impact is insane. And hidden. The suffering caused by the pain and illness, never seen. The extremely bad days, never seen, because they are behind closed doors. It isn’t something that can be known. It just isn’t. You can’t know a whole life of pain from a conversation. You can’t Know it. So it is invisible. And you then get the stigmas I mentioned. The doubts. The perception issues.

I suppose we don’t need them to. What we need is the lack of stigma and discrimination. That is what we need. One place I worked was seething in it. I got sicker from it. So sick. The pressure to push through the pain made me so much worse, but I feared being fired. Because that was what was implied to me so often. If we could just not have that, then we wouldn’t need people to understand the depth of the experience, which they never could. We would simply do with being treated properly, respectfully and understanding of our limitations.

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2 comments

  1. I am fortunate. I don’t have to work. But I understand the extra stresses it must cause you having to keep up that front on a daily basis, which in turn makes the illness and pain worse. I posted about my invisible illness too. I was unsure whether to because I didn’t write it for sympathy, but to inform and encourage, but inevitably people feel guilty that you have that experience and do express sympathy which in turn makes me feel maybe I should have kept quiet. I don want to make people feel bad because I have bad days, I have a life and I smile and I’m creative etc.

    Like

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