When I was first diagnosed with ankylosing spondylitis, I was relieved, but I was also confused because I wanted to know, “How did this happen? Where did this come from? How do I have a disease whose name I can barely pronounce?”
The relief was because I had struggled with unbearable pain for years without any answers. In my twenties, I had knee and lower back pain. By the time I was forty, it moved to other joints and just got worse. I tried everything to get a diagnosis. I got tested for the RA factor more than once, but the results were always negative. At one point, I was diagnosed with fibromyalgia. However, the medications I was given for it didn’t help me. I told my grandmother, who had once received the same diagnosis, and she told me that a female doctor told her that a fibromyalgia diagnosis is often given to women when doctors don’t know what’s wrong. So that information didn’t help me. One doctor blamed my pain on sleep deprivation and suggested I see a sleep psychiatrist. After a sleep study, he agreed that I was sleep deprived. I was so fatigued that everything was a struggle for me. He told me to apply the Nike motto to my life, and “Just Do It”. So basically, the doctors were at a loss as to what was wrong with me. The pain was so bad that when my daughter was in high school and college, I had to stop working.
Doctors who saw my X-rays and MRIs asked if I’d ever done hard labor or participated in rough sports because I had arthritis in both knees, a bulging disc, degenerative disc disease, and stenosis in my lower back. I found a new general practitioner who suggested I see a rheumatologist. When I met with the rheumatologist, he did the range of motion test, looked at my records, and said, “I feel like you have ankylosing spondylitis.” It had taken a good five or six years to get a diagnosis of AS, and then it took two more years to find the right treatment course.
The right kind of support group took time, too. When I was originally diagnosed, I joined a rheumatoid arthritis group as well as some AS support groups for women. They were good groups, but something was missing. The female only AS groups consisted mostly of white women. There were a few black women, but it was hard to know if they could see my posts. I needed answers to some very specific questions. For example, I wanted to know about biologics and hair relaxers. I wanted to know if my hair would fall out. If so, how would it grow back? I also had questions about the efficacy of the treatments that other black women were currently prescribed. My doctor had told me that there were probably no more than twenty black women in the US with AS. I wanted to know if other black women had heard the same myth.
I didn’t want to be off-putting to the kind women who answered my posts and who happened to be white. I appreciated them. At the same time, I also wanted a place for black women. So I decided to start a group for black women. I joined different AS groups online and promoted our new AS group for African American women to join.
Over Memorial Day weekend, I posted about our group in a major AS Facebook support group for the first time. After making my post, I went to sleep. The next morning, I found over 500 comments under my post. Many of them said, “How dare you exclude yourself from this group! We should work together. Why does it have to be black women only when we all have the same disease?” My response was, “I know we have the same disease, but black women have a harder time receiving a diagnosis. Many doctors don’t believe we have the disease.” I didn’t want us to be a separate group; I wanted us to gain the attention and support we needed from each other and the medical community. There were certain things only black women would understand. For example, what it’s like to be a black woman and hear that white people can have the disease, and black men can have it too, but it’s nearly impossible for black women to have AS. Some of us have heard the myth that African women can’t have it at all, and only women of African descent from America can have it.
Eventually, there were over a thousand comments on my post. Some people defended my idea, and some people even called me a racist, which blew my mind. I wanted to remove my post, but one of the AS group admins said, “No, don’t remove your post! This is an important topic, and the comments prove how much you need a support group for black women.”
Then something strange happened. A man sent me a private message on Facebook. He said, “Hey, I really like your Facebook cover photo.” It was a photo of a stained-glass installment related to my sorority. For my sorority’s hundredth anniversary, we paid to have a stained-glass window installed in the chapel at Howard University with our founders’ names on it. His message made me wonder, “Who is this stranger and why did he like my picture?” So, I thanked him, and he then started to ask questions about my AS diagnosis.
Finally, he introduced himself as Richard Howard from the Spondylitis Association of America. Later that day he called me, and we talked. Laurie [Savage, then-executive director of SAA] also reached out to me. They both agreed that black women needed to have our own space and that we also needed to be included in research studies, which we never had been. SAA is a one-stop shop for everything related to the disease, so it was good to have their support. They let their members know about our Facebook group, BLASST—Black Ladies with Ankylosing Spondylitis Standing Together.
That was seven years ago, and we are still here today. Eventually, we will expand. There’s so much more I want to do with this group, such as advocacy related to the price of medications. It’s a shame that people still have to think about whether to purchase biologics or be able to afford food or rent. Outreach is a must for people in underserved communities who don’t know about AS and are suffering in silence. Many members of BLASST are part of the Black Greek Letter Organization. There’s a lot of power and solidarity in those networks and together we can brainstorm ways to bring awareness to this disease.
Right now, BLASST has a membership of over 350 women. The most rewarding thing about the group is that during those times when you’re so tired and in pain, you know you have this community that can relate. Sometimes we have a good laugh about different things we deal with in our community. For example, we all in our group have met well-meaning church ladies who say, “Oh, just pray on it and your arthritis will go away.” Some even say, “Boy, you must have done something very sinful to get a disease like that.” Sometimes, it’s just nice to have the women in BLASST to empathize with you when other people just don’t understand or minimize our experience. We all need a soft place to land. That’s what BLAAST provides to those who need it.
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