Feeding the Stigma

This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.

And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦‍♀️

I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.

My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.

Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!

Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!

But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.

I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?

Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.

THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.

I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.

Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.

I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.

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