Thread by @MistuRants

“Good afternoon everyone. I am Jay’s husband. Just wanted to inform you all that we lost Jay some days ago.
She’ll be buried next week. We’ll share the details if some of her friends on the group will like to attend.”
#LupusAwarenessMonth

“Good evening, family. I am sad to inform you all that we lost one of our sisters, Tee. We are mobilizing a team to go visit her family. Here’s her husband’s account number for us if we’d like to donate to her family.”
#LupusAwarenessMonth

These are the kinds of messages we often get on our lupus support group chats and I personally cannot count how many times I’ve wanted to leave the groups because I just couldn’t deal with all the sad news about how #lupus is killing people like me.

#Lupus support groups are supposed to be a form of support as the name implies but what does one do when you no longer find support in these groups but pain, sadness and a reminder that death is hanging above your heads?

I remember when one of our most active members on the Labalaba support group chat died. This was someone who showed up for every awareness event, who celebrated everybody’s birthdays and was always actively planning events for the group. I was broken for weeks because howwww?

She was one of the healthiest warriors, so positive and full of life. Always dropping motivation for all of us. It was hard to believe because if someone like that could lose the battle to lupus complications, who was I?

There was a time we lost 7 sisters to lupus nephritis in less than nine months. I cried my eyes out for days and I’m sure I wasn’t the only one who did. I started feeling like the support group was becoming toxic to my mental health. And that it was much better to just leave

But leaving would mean that I was denying my reality. Pretending that lupus doesn’t kill, or that people don’t die, with or without lupus. Death by lupus is common so I had to accept it even if I still pray that that wouldn’t be my fate. Leaving wasn’t going to change that

When we lost 9 year old Cee, a male lupus warrior and we had to visit his mom. It was a disaster because those of us who went, cried even more than the mom. At some point, it was the mom consoling us grown adults. Till today, I still wonder if our presence comforted her at all

Cee’s death affected me so much because we were admitted to the hospital at the same time. I saw how his mom was running around buying and doing everything she was asked to but she still lost her first child.

The survivor’s guilt also never went away. I felt bad that he didn’t survive. The group chats give me anxiety. There are times that I don’t read the messages because idk what might be waiting for me there. Another news? Another gofundme for a sister who needs an organ transplant?

There’s always something. I wonder how the founders of the support groups who are #lupuswarriors cope. You have to deal with your own condition, but still have to be strong for others, try to find money to help those who can’t afford their meds, and plan awareness events too

In all of that, there are those who believe you’re not helping enough.
“I’m dying and I can’t buy my meds, what’s the support group doing about it?”
We know how hard it is to raise funds in this country. People don’t even know about lupus, so where do we start?

One of our lupus founders buy and donate meds to lupus patients from time to time, from her own pocket. And when we lose sisters, she mobilizes others to go visit them and also donate money.
It’s exhausting. But we need our community because we are all we have. For now

Asides loved ones, no one else understands what it feels like to have to manage this condition in a world that doesn’t pause and wait for you. Speaking with others who can relate helps emotionally even if it makes us uncomfortable sometimes.

I fell ill out of the blues today and while I was still trying to get a grasp of the pain, and beating myself up cus I’ve got lots of work to do today, I got the news that we lost a lupus sister. In that moment, I couldn’t even be hard on myself anymore.

#Lupus is really a thieving bastard and my biggest wish is for a cure to be found in my lifetime.

If you’d like to donate to the LUREG FOUNDATION SUPPORT GROUP for Lupus patients, here’s the account details. 👇🏽

Lureg Support Foundation
1000671591
Lotus Bank

#LupusAwarenessMonth

You can also reach out to donate to the @thelabalaba foundation. Your donations will go a long way in supporting #Lupuswarriors who can’t afford their meds/ organ transplants.
Thanks so much for your prayers and love so far #LupusAwarenessMonth