Stand Up and Be Counted

There’s seemingly only one group in my country that deals with AS. It’s run by a leader who I’ll liken to Chairman Mao. She’s only nice to you if you belong to her ‘communist’ party, if you’re not a communist like her, too bad, you’re on your own.

Not good.

I posted in an international forum and the only answer I got was basically impossible to do here in Africa.

So, in this Facebook group run by Chairman Mao, people post asking about the cost of Consentyx, Enbrel or whatever biologic they’re going to be put on. Far as I know, biologics are medication, right?

But let’s back up a bit. I joined a WhatsApp group that was for my specific province. I asked a question about my eye- when it turned out I had scleritis. I got maybe two answers max. Only one answer was that I should see a doctor. (I’d asked if I should relax because it’s pink eye, or if it’s one of the eye afflictions we tend to have as AS warriors. I’d never had pink eye before so I didn’t know if my symptoms were it or something else. )I felt so ignored, unseen. It was lonely…Support groups are meant to support you.

The very next week, someone asked the same question. Someone who is closer to being communist than I am. The answers poured in, showing lots of concern and telling her to hurry and go to the doctor quickly “because you can’t mess with your eyes. It can go bad very quickly.”

I should have left. I should have left. But I thought maybe I was seeing an issue where there wasn’t.

I know, that was too optimistic of me.🤦🏾‍♀️

A few weeks later, I shared a photo of myself wearing my AS warrior top. A few people asked where I got it. Given the group is ALLEGEDLY all about spreading awareness, I cheerfully shared the number and name of the person who did the printing.

Chairman Mao responded with a, “Do not use this group for advertising.”

That time, I DID leave. It was her tone, like I’m some naughty child. And it was the fact that they had been going on about spreading awareness and this was a tool for awareness

So, back to the Facebook group. A non communist like me joined the group yesterday. She said she’s on treatment but is struggling with terrible pain at night in specific joints and was asking what to do.

Nobody had answered yet when I saw her her question and responded to it. I told her that despite my being on Trepiline which supposedly also aids you with sleep, my sleep is extremely disturbed by pain so I can relate. I mentioned that I’m waiting to start biologics and asked what treatment she’s on. I ended with sympathy for her struggles.

I never received a response notification so I went back in to see why. She’d sounded pretty desperate after all. And I’d wanted to tell her that the med she’s on takes a while to start having an impact, or to tell her to ask her rheumatologist if there’s another option she can try. I just needed to know so we can hope it would yet take effect, or ask her rheumy for further help. It’s been quite a few months since diagnosis.

I realised why I hadn’t received a response to my comment. Chairman Mao had erased my response.

And she’d written that we must not discuss medication.

Do not discuss medication in a group talking about a disease? Excuse me?

And what??

I posted screenshots of where communists like her had spoken about medication, naming steroid injections, talking about Salazopyrin dosages etc.

My goodness, she’d made her communism so apparent.

And so, I left. I didn’t even wait to see what communist nonsense she’d spew to defend herself. I left.

And yes, by ‘her communism’ I mean her racism. I don’t see any other reason why I’d be ignored by a bunch of non Black people, while non Black people with the same problem get lots of support. Nor do I see why she’d only rap a Black person on the knuckles for something White people had been doing all along with no reprimanding.

And why not just issue her command without erasing my sympathetic comment? Was she wishing she could erase the new member and I too? That was the height of arrogance and rudeness. And lack of respect.

I remember sharing some thoughts from the group and my Black friend asking if it’s rare for Black people to have AS because not a single Black person had said anything.

Maybe Chairman Mao made the group so uncomfortable that many left. I’ll never know.

So here I am. All alone. Dealing with a rare disease and no support group.

Better that than to be belittled by some small woman with a large ego.

And I hope they do take my name off their register as I requested, they don’t represent me after all. If they did, one of them would have spoken up.

But they were all silent.

They are all complicit.

Silence is painful. I hope I speak up for anyone I come across who is being blatantly unfairly treated. I hope I never participate in the erasure of someone, but show them that I see them. I hear them. They matter.