The Autoimmune Girls

Today, I discovered that I am one of the Autoimmune Girls! What an honor, right?

A bold declaration to start with, I know. A little backstory is necessary to get the full context of this interesting nickname and why I was so shaken by the discovery.

In January of 2018, I started getting weird headaches behind my left eye. Not thinking they were anything serious, I attributed the pain to sinus pressure. I managed for a while until the pain shifted to my jaw. My dentist didn’t find any problems with my teeth, and I carried on for a couple of days.

That’s when my eye got red.

The white part of my eye was very irritated. It looked like I had pink eye (conjunctivitis) and my eye felt like I had been punched in it. It was sensitive to pressure and light.

Off to the ophthalmologist with me.

I was diagnosed with scleritis after an exam and some bloodwork. Scleritis is an inflammatory disease that affects the white part of the eye, the sclera.  Anterior scleritis, specifically.

The weird part is that no one is exactly sure what causes scleritis. Trauma to the eye can trigger the condition but it is most commonly associated with autoimmune disease. I’ve never had any signs or symptoms of any autoimmune disorder, but the eye doc suggested seeing him regularly to keep my eyes healthy and to monitor my bloodwork. I wasn’t one to argue. I have to get checked out every three to six months and my eyes are mostly fine. He tests for rheumatoid arthritis, anemia, diabetes, and lupus when I visit.

Runs in the Family

Flash forward to March 2021.

In my Mother’s Day post, I talked about how my mom and I are prone to getting odd ailments. This time is no exception.

Back in March, my mom had a battery of blood tests done during a hospital stay. She had hurt her back in a fall but some of her other symptoms were confusing the doctors, hence the bloodwork. Amongst the other results that we were aware of, we found out that she has genetic markers for Tolosa-Hunt syndrome.

Girl, What?

Tolosa-Hunt Syndrome is a rare condition that involves pain or weakness in the eye muscles. It is also characterized by a lot of headaches centered on one part of the head. The disorder has no specific cause, but it is related to inflammation in the areas around or behind the eyes. It made a lot of sense to us. My mom’s headaches are so frequent, she doesn’t complain about them anymore. They’re just part of day-to-day life.

Eye doctor visits are interesting. I always get my eyes dilated and it can very painful. For those who have never had it done, I will explain. The optical technician does a quick reading test. Usually, it’s the old cover-one-eye-and-read-the-chart test you see on tv shows. We do both eyes and then it’s time for the drops. Three sets of drops in both eyes that burn like the dickens. I complain about it to the optical technicians every time but it’s just unavoidable.

The burning fades after a few minutes but then my eyes feel swollen. They aren’t but it is harder to keep them open. The pupil opening up makes you much more sensitive to light. You should wear sunglasses after the exam and avoid light as much as possible the rest of that day. I usually go home and take a nap. I can’t see anyway.

My eye exam continued, and the doctor assured me that I didn’t have a thyroid condition. My bloodwork looked good, and I wasn’t anemic at the time. The pictures of my eyes looked good too. I didn’t have glaucoma and the scleritis was under control. I made sure to relay my new medical information to my ophthalmologist during my visit. My mother and I see the same doctor. He is familiar with her case and said that diagnosis made sense because of my mom’s autoimmune diseases. Inflammation is always part of the package.

Then, he reminded me that the acorn doesn’t fall far from the tree and that I wasn’t a young girl any longer. That was part of why he wanted to keep an eye on my bloodwork all this time. To be sure to catch something as soon as possible. My eye doctor declared that I was “definitely one of the autoimmune girls but my condition hasn’t presented itself yet.” He proceeded to tell me that I shouldn’t be surprised if something like lupus or rheumatoid arthritis shows up within the next five years.

Five years! 

In five years, I’ll be 43. I know these disorders don’t care about age, but damn. That wasn’t something I was prepared to hear at the time. Your girl was not ready at all. You can exercise and eat right as much as you want but if your genes have decided to have their way with your body, it can’t be avoided. Sure, doing those things can’t hurt. It might even put the onset of certain illnesses off for quite some time. Although, it might only be a matter of time.

Listen When We Speak

I know this sounds a lot more down than my usual posts, but I’m reeling here. It might have been a little insensitive to relay the news like that, but my eye doctor is a “facts only” kind of guy. He doesn’t sugarcoat things and I appreciate that. I need to know what’s coming down the road and I am glad that he listens to my concerns.

A lot of Black women have huge problems with that. Our pain and complaints are often ignored or dismissed. Many ailments go untreated for years. Sometimes, women die because no medical professional would take us seriously. The most recent case of Erin Gilmer serves as a tragic example of what women are suffering through because of medical neglect. She wasn’t Black, but the message is the same.

I’m glad I could speak up for myself when I felt like something was off. I have been blessed to have worked with doctors and nurses that took my words seriously and helped me to get the necessary treatment. Not all of the doctors were helpful, but I was able to find those that would without much trouble. I’m probably in the minority here, especially among Black women. Black women are three times more likely to die from a pregnancy-related cause than White women, for example. Still. It’s truly sad. It’s time to do better.

It is a little scary to declare that I am one of the “autoimmune girls”, even though nothing major has happened yet. I have had some achy joints and odd issues with my eyes and sinuses. Does that make me part of the club, just like that? I’m not sure how to feel about it. There’s nothing wrong with it. It is what it is but this is still new for me and I’m processing the best I can. Forgive me if I have offended. It wasn’t intentional.

Are you an autoimmune girl (or guy)? What was your diagnosis journey like? Any helpful tips or resources for a newbie? Hit me up in the comments and let’s discuss.

Take care! I love you! Be well!