So I encountered someone random on social media with an illness that said we should not discuss ableism because people do not get our illnesses and… it doesn’t matter. I don’t know his life but maybe he has not experienced pervasive stigma like some of us have such that we know the need to spread awareness is vital. Or we get treated like crap by society and ignored and treated as lesser Than. But no, we do not have to be flippant with jokes on ableism. That isn’t necessary. People do not understand chronic illnesses because they do not have them… that isn’t funny or to be mocked.
And here is why he was true about chronic illness
Okay, so I have often said we do not have to validate our pain to anyone. They have no right to it. We still have to deal with it regardless of their opinion. And frankly, some people do not deserve the effort.
And it is also true that people understand from their perspective.
If they are healthy or have some small minor managed illnesss they are not going to understand a major life-altering chronic illness or chronic pain. They are going to come up with suggestions we have heard one billion million times. Because they don’t know what to say but feel like they should say something. And some of them actually are just dicks about it as well. And the majority of these people literally do not matter in our lives. And we do not need to Proove our illness. We do not need to say a damn thing if we do not Want to people who have little significance to us at all.
And we can with invisible disabilities choose when to reveal and when to conceal
With an invisible illness, we have the option to mention our illness or not. We can reveal, to whatever level we are comfortable… or conceal. We have that option in our lives. Sometimes we do not want to meet new people and have to explain the minutia of our illness. We just want them to know Us as a Person. We are not our illness, after all. You wouldn’t believe what I have learned walking about with a cane. Apparently, it is free access for people to ask why you need a cane like it is any of their business. And I don’t like that. Not used to it at all. And there is a freedom with our invisible illnesses that we don’t have to explain a damn thing unless we want to.
But he was rather wrong about chronic illness as well… because some people really do matter.
- People we love
- People that directly impact the quality of our lives
And that is actually a lot of people.
People we love
Our family and friends and our spouse. All of these people Matter to us emotionally and we would like these people to understand on some basic level our needs and limitations. We do want to counter ableism or stigma here… we do Not want to be seen as just lazy to people we Love. And any other stigma we encounter coming from our loved ones we want to counter and explain the truth of the matter. We want them to have our backs… not be one of Those People.
Those people that directly impact the quality of our lives
Hate to say it but we need awareness because of the fact there are a lot of people that directly impact our quality of lives with a chronic illness from co-workers, employers, insurance companies, to all medical professionals we encounter.
I have worked in a toxic environment not from co-workers (although, yes, I have worked with some dicks as well when it came to my chronic migraines) but with a boss. And with stigma the thing is it can make work a living hell hole that you wish every morning you didn’t have to go to… you’d rather die that moment than go to. Sound like fun? Because it really, really wasn’t. I was lucky I got out alive because I almost didn’t. So Maybe some awareness and lack of stigma would help in situations like that… just a wee bit of education and some knowledge on discrimination and accommodation. To say we should never discuss ableism Ever is to say that people should except that hell and just deal with it because, well, they will never understand our illness anyway… screw that… we deserve better than that.
We deserve workplaces that allow you to work from home if you need to some days. That allows you to come into work at whatever time you choose, as long as you get your work done. That allows flexibility. A workforce like that… would accept a lot more disabled people than the world does now. Now they try to force us into a system that isn’t designed to fit us and wonder why we struggle and wonder why we become disabled from work. Most of us cannot do the routine. We are not reliable or dependable like that and we can’t be.
Okay, I know in the US this is a lot more complicated. But what I’m talking about here is short-term and long-term and eventually government disability. Did you know I was denied short term insurance twice? And this last time it took over a year to get approved for it? For Vertigo (and FM and chronic migraines) but actual vertigo. It should be simple but I am what they think of as a liability… a cost. They don’t want to pay. And so they needed evidence and more evidence and more evidence. And you know how long it can take between the tests and appointments with specialists and more tests. Time. That is stigma because short-term is there for when you cannot work right that moment according to your Doctor and then if it needs to persist you need evidence. Nope. Not for me. And not for many of us. We have to really, really, really fight for our rights. And I had no choice but to fight because I was incapable of working or driving and much of any damn thing… unless I can nap at work 4 times a day and make 300 errors a day while I am at it, zone out and not understand what people are saying to me, and falling down among other issues. It was idiotic.
Anyway, long term got approved quickly due to the loads of evidence I had. But this is also usually a real fight because when you have been on it for a bit it goes from ‘cannot work your job to cannot work any job’ and they will try to boot you off. I was on long term before. And they booted me off saying I was ‘significantly better’ when in fact I was suicidal and not better in the least… which led to my second suicide attempt. I had no fight in me then though… because, well, suicidal. And we have to have fight. No fight… we are screwed. This time it wasn’t really a fight… I can’t do anything. It has even taken me about a month to write this post and as I write it right now I feel like throwing up because vertigo causes a lot of nausea and apparently that is hard to manage because the dizziness Never Stops even with medication.
Government disability can take years and years. It can take lawyers and court appointments. It can be the fight of your life when you are sicker than hell. I got approved right away. Not even sure why. Maybe All of This combined. Maybe because of the information sent in. The evidence. But usually, that isn’t the case at all. Usually they deny right off the get-go, maybe to weed out the fakers? Not sure. But it isn’t fun for those of us who are sick. Can’t work. And struggling financially. But we have to persevere because we can’t do anything else. We have no choices at this point.
And if you think awareness isn’t needed when it comes to disability I’d like you to consider this: Living wage vs. Disability income because we are not valued by society enough for us to live a basic living. And we have to pay for so much out of pocket… but when you are disabled… that becomes Impossible. And you want to scream when someone suggests acupuncture or something else… that costs Money. Or supplements or whatever.
‘Just take a bath and have an Advil’ – told to me for a 7-day straight acute migraine by a doctor.
‘I don’t believe in fibromyalgia’ – told to me in the ER with fibromyalgia-related chest pains. He never found out it was costochondritis because he didn’t do fuck all.
‘You have anxiety’ -told to me by the ER doc when I had severe chest pains, some inflammation around the heart thing I had been informed by another ER but it hadn’t gone away and I had been told to come back- but this dude saw I had depression.
‘You’re just depressed’ – told to me when I was just young at 20 complaining about the constant pain that was getting worse (just prior to my fibro diagnosis with my actual doctor and specialist but this was in the town I in. I was young and a woman, so clearly depressed.-
‘You’re too young for medication’ – told to me by that specialist who diagnosed me with fibromyalgia.
Oh, I could go on and on and on. About stigma for being young. For being a woman. About having a mental illness. When it comes to the medical field. All of which affect diagnoses and treatment and quality of life.
Here is the thing with stigma in the medical field… when you have experienced since you were young you begin to become stoic about your pain… because you don’t want to appear to be exaggerating. Because they Treat You like you are exaggerating. But then because you are stoic now… they never believe how much real pain you are in. Sort of doesn’t work. And stigma also makes you feel small and unheard and disillusioned. And like maybe you should wait to see the doctor about that symptom until it is Really important or bad (this bugs the hell out of my doc, but hey I learned it from all the bad docs). Anyway, awareness about stigma and training about pain – all these really matter for our actual treatment. It is a big deal.
In the end, stigma and ableism affect us in many, many ways. I walk with a cane now and that is a big old neon sign about my head that I am ‘not a normally functional human’ so people open doors for me, get out of my way, let me get ahead of them in line and do other weirdly overly polite nice things that you would never ever experience with an invisible disability. And stigma with an invisible disability is extreme in society. Can’t see it… it should be doubted, denied, mocked. And it that isn’t something we should fight for awareness on I don’t know what is. So I disagree with this guy a lot. Sure some random dude that comes up to me… I don’t need to validate my chronic pain to him or her… and they may not deserve my story. But in pretty much every other aspect of life? And in society overall? We Need awareness. We need people to tell their stories. We need people to understand other people’s perspectives a bit.
But yeah, day to day life… maybe you don’t want to tell your whole life story to every random person you meet. Of course, you don’t. And maybe you don’t with someone you first meet… it isn’t who you are as a person after all. And, yeah, it is true people will not ever get the depth of our experience. Just like I will never get the depth of many experiences I have never had. But, dude, awareness is very important if we want to have an valid place in society. If we do not want stigma and discrimination all the damn time. I hate all that. No one wants to deal with that crap and we shouldn’t have to.
Be careful what you tolerate, they will use it against you
Chronic pain: don’t steal lives doc
Invisible illness: hiding in plain sight