Well Hey you!
I hope the New Year has been everything that you've wanted it to be so far. If not, I'm not mad because for me, January is just a trial run. February will be the real deal.
So one thing that I keep blabbing about but I never seem to get on it with is this support group. Have you ever said that you were going to do this and that with high confidence and motivation but when it's time to get to it, you're like, " I'll do that another day". See! That is me and I will holler "I'll do that tomorrow" until pigs can fly.
It's like, I can see the support group in my dreams but I just give up or don't even bother with it when it comes to planning and organizing for real for real. This support group has been on my mind for a while now and I really know it can help many people; with or without Lupus. I want to create an environment for individuals that is a safe space for them to share their concerns, receive comfort, motivation and encouragement. I remember when I first was diagnosed with Lupus, I knew NO ONE that had it and I felt alone. I heard stories of people who had Lupus, but the end was always bad I wanted change that narrative.
So why the support group? They already have one in the city.
Well, one time I attended a support group meeting and I was very unimpressed. I felt welcomed but I didn't feel included, if that makes any sense. For one, the atmosphere was SAD AF! I mean damn! I had went for support, NOT to be reminded that Lupus sucks and all the BS that comes with it. I was looking for an outlet with people who could understand, yes, but damn! There was no inspiration, motivation, or even encouragement and for me, I was totally disconnected.
For those who don't know, Lupus is between 2 to 3 times more common among those of color. So sitting in there, honestly, out of the 20 people that were there, only 2 other people looked like me. There were others that didn't look like me and check this; THEY HADN'T EVEN BEEN DIAGNOSED WITH LUPUS!! Now I do understand that Lupus, in some cases, can be an illness that is difficult to diagnose. However, how can you seek support for a disease that you're not even sure you have!? At this time, I had just received a kidney transplant and I wanted to share my story and give hope and um...yeah... they looked at me as if I was trying to tell them I was Jesus. Once I gave my testimony, they continued to indulge in the pity party (I really don't want to call it that) that they seemed to want to have. The other 2 people of color that were there with me remained quiet. They asked me a few questions and I reassured them that even though there may be bad days, there too will be good days. One had just been diagnosed with Lupus and was scared due to all the shitty stories that others shared of their experience that may have nothing to do with Lupus. *Rolls eyes* Also, this was around the Lupus Walk time. I had my team formed already so once the facilitator mentioned the Lupus walk and their team, I didn't sign up because I knew I wasn't going to be a part of it. The facilitator walked over to me encouraging me to join the team and when I told her that I already formed a team, she seemed, disappointed. But shouldn't she been happy that I was going whether I was on her team or not? That was the last straw for me.
So from that point, I said that I wasn't going back despite the fact that I was encouraged to try it again. Like I promised myself, I haven't been back. Plus, the facilitator didn't have Lupus so she could've listened to my story all day along with the rest of us but the experience for both her and I may have been different had she had lupus and those there were actually Lupies. Now let me get this one thing straight. I am NOT knocking them completely because they think they have Lupus. For me, they controlled the atmosphere of the room and they hadn't even been diagnosed with the disease. That's like me going to a Cancer support group and because I lost my hair and have been feeling weak; even though the doctor didn't confirm it, I talk from a space like I have been diagnosed with cancer. I know I've said a million times that we are our best doctor, but to diagnose a "chronic illness", Um... No.
I want this support group but I guess I'm speaking out for help because I could sure use it! Any takers?
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.