Telling people about your chronic illness

@lil_tachy

And thats on period #xyzbca #pots #posturalorthostatictachycardiasyndrome #chronicillness #chronicallyill #potsie #potssyndrome #potsawareness #dysautonomia #dysautonomiaawareness #hypermobileehlersdanlossyndrome #ibs #mcas #lupus #lymedisease #smas #diabetes #fibromyalgia

♬ original sound – Kirsten🏳️‍🌈

Facade

This creator talks about a common thing that we all do. I call it the Facade of Well-being. She calls it Masking, which is a most common phrase these days. We will mask our symptoms to make it easier to get around in the world. To make others comfortable and just make things a lot easier for ourselves.

Doubt

And she points out there will be people who doubt us. Again we all know this. Part of the problem is that we mask so well. Damn well.

Her solution- Complain More

Her solution is that even when she is masking her symptoms is to inform people of them. Her friends, family and co-workers. She is telling them her accurate state of being. She has vertigo, she is very sick actually- whatever the case may be. (My examples). So that people understand that is her regular baseline and not the HOLY HELLBALLS flares we get. So when she does get a flare people can comprehend the contrast. Whereas, this is where people might think you are exaggerating or faking or whatnot as the case may be. So complain more so people understand the every day.

I dig her post. Check it out.

I get it because I have been told this

I get what she is saying. I had a psychologist say something similar to me. He said I had to express my pain because my spouse and others, are not psychic, and can’t tell my pain level that day. It is that with chronic pain we get pretty damn stoic about hiding our pain levels and functioning, not that we’re not in pain but we learn to tolerate a crapton of it. And intolerable levels, well, we’re at home curled in a ball and people don’t see that.

My spouse likely didn’t have a problem with bad pain days. Although my psychologist pointed out being quiet and laying on the couch with a certain dull expression could be angry or it could be a boatload of pain. Because I’d get silent with anger. Just my personality. In its unhealthy manifestation, in my younger years. I didn’t express anger loudly or well. Again my spouse isn’t psychic. And certainly on functional pain days he can’t know How functional I am.

He recommended a few ideas to get me to express my pain in healthy ways at home. Since I used a calendar for appointments- among other things, he said write my pain number on there. Pretty easy. In the open. But that way I didn’t have to communicate it all the time and feel like I was complaining. Which I did feel like I was if I expressed myself.

Problem

Did I take this useful suggestion? Of course not. I’m stoic. And don’t like to make a fuss. Because that is what the rules of society have taught me for decades.

I have a strong encoded preference to not mention things often. I do mention them occasionally. Even that makes me uncomfortable. I know I have been trained to be this way from stigma, from my doctor’s behaviors, from society and whatnot. But it is what it is.

But I get it both ways

I get her points. I have talked about it myself many times before. We make ourselves more invisible by the facade we create to make things easier to deal with and that which others expect us to wear. Such that when the facade fails us, they think we are faking it. It is an inevitable cycle.

Likewise, talking about it all the time makes us seen as chronic complainers who therefore must be exaggerating maligning. Making a fuss to get attention. It also sometimes invites negative gossip and stigma from those that would discriminate against those with disabilities that are invisible. Or at least in my experience, the more open you are with your illness the more of these malicious gossipers you get. I have seen it with myself and coworkers.

I had a coworker with depression who was getting some workplace accommodations. And the vicious things they said about how she must just not want to work and how lazy she was and worse- was brutal. She was very open about her depression. She had to be to get that accommodation. And that is the price she paid. I had depression at that time. Quite seriously and due to my pain. Trust me when I say, after that? I would never have mentioned it. I didn’t either. And that was a dangerous thing to do, in my case. Stigma just promotes more stigma.

The facade can be a bit of a buffer from workplace discrimination as well- the more open you are about your disability the more likely your workplace is going to discriminate against you for that disability if not find a way to replace you. Not saying all workplaces. Most. But not all. A whole lot of them. But not all. Hell, in most cases, hindsight, I would never disclose a disability or invisible illness. At all. Ever.

Well, not in some workplaces I had that were not understanding in the least. But I had some that were as well. It is the hellish ones that leave an impression on our souls though. Tear our self-worth to shreds. Wear our self-esteem down to nothing. And that poor mood becomes a beast of depression.

Invisible

But disclosing or not in the workplace is another issue. And a hard one with a lot of facets to consider. This about talking about your chronic illness to make it more Visible. And I still wouldn’t. Not knowing the cost of doing that. Nope.

There is nothing wrong with talking about it. Or not. It is a matter of revealing and concealing. You can reveal as much as you want and conceal as much as you want. To whoever you want. You want to be honest with you friends but not your coworkers, then go for it. Partly honest, then go for it. It is up to you and your comfort zone.

These days I use a cane sometimes so that sort of ruins my invisibility factor. My invisibility cloak is gone. Still, as is my right, I can disclose as much or as little as I want to people.

And they can doubt me. Because they can be wrong, as is their right. And I don’t care if they are wrong. They can sit in their wrongness for the rest of their lives and it wouldn’t bother me. I don’t have to validate myself to them by showing them bloodwork, MRIs or performing for them. If they think I am faking, that’s on them. Who said I have to prove anything to anyone?

The only people I need to talk to my health with are my health professionals. Everyone else, it is a matter of what I decide I want to talk about.

People are not going to understand you if you tell them more about your symptoms. Or less. Or more about your pain. Or less. It is just your perspective is entirely different than theirs. If they don’t get it, they don’t. And it isn’t up to you to make them. I don’t need everyone to understand everything about me. I don’t need them to understand what chronic pain feels like. What my symptoms feel like. If they know me well, they will know I have bad days and good days and that’s good enough.

But I know this bothered me a lot more when I was younger than it does now. This fact that people didn’t comprehend what I was going through. Or Doubted it. Or thought I was faking it. Now, meh. Let them. It only matters to the people that matter. And for those ones; medical professionals, insurance companies and such they do get an abundance of evidence. The rest of people that matter in my personal life do not need the nitty gritty minutia of chronic illness to know its effects on my life. Nor do I think they want it.

But that is me. I do blog about it. Write about it. I’ll talk about it, if people want. I post about it. Just not in my day to day life. Not that those people can’t look me up, if they felt like it. It’s all on here. I’m pretty blunt in my writing, if you ever read my old blog you’d remember that. And you’ll see that now. So people can read anything they want about me if they cared to really. But I am not going to be the one telling them my pain level day to day or what symptom sucks the most at that moment. I think partly its my personality, partly my generation (gen X) and partly that absorbed stigma over a few decades.

I think she has the right idea of it, in the relationships she desires to be open with. I think we should bring more visibility to disability. Being stoic never served me well. I could tell you some stories about that as well.

See also

What to do when we experience setbacks