Invisibly disabled at the intersection of marginalized identities

I knew something was wrong long before I was diagnosed. I was gaining weight. I was reasonably active or at least maintaining a certain level of activeness. I was a healthy eater. I didn’t fry anything but an egg and rarely that. I didn’t eat canned foods. I made baked goods with almond meal and smoothies with only soy milk and agave nectar. I sautéed my kale with fresh mango slices. And I was gaining weight. Continually.

Then I noticed I was budgeting energy the same way one figures out how long can their last $5 last them and on what. I don’t even know when it began. Just one day I realized that I was daily mentally negotiating: If I take a shower now, then I won’t have enough strength to get dressed and go to work. Gotta pick one or the other.

I’d go to bed at night. Sleep all night. A full night. Wake up in the morning. And within an hour or two, I was so sleepy, so exhausted, it felt like I had not slept at all. A tiredness deep in my bones that I can only liken to my last-week-of-full-term-pregnancy-with-an-eight-pound-baby-sitting-low-in-my-uterus tired. Every. Frigging. Day.

Something was definitely wrong.

The first folks to teach me that nobody gave a flip about signs of chronic illness in a Black woman’s body were the good doctors I saw at a west suburban Chicago hospital. I went specifically because of the weight gain. That was the red flag, oddly enough, that concerned me the most.

See, I was born with a congenital knee defect. I wore braces on my legs as a baby and walked fine, but somewhere around puberty, my knees started slipping out of place. After my father got me in to a specialist at The Shriner’s Hospital, I was given big shiny blue metal Forrest Gump leg braces and told to stop doing all the cool flexible stuff I could do with my legs because it was making it harder for my ligaments to remain tight enough to hold my knees in place. My teenage self, as can be expected, was not very gung-ho for these recommendations. And unfortunately, my knees never stopped slipping out of place and became even less stable anytime I regularly exercised. Then there was the little problem of not being able to breathe when exerting myself beyond walking due to damage from second-hand smoke as a child. And the thing about breathing is, it’s incredibly essential to being able to exercise.

That’s why the continual weight gain caused me the most alarm. Something was causing me to gain weight that had nothing to do with my actions or inaction, and if it continued, I knew my body literally could not engage in the very activities that could reverse the weight gain; i.e., lots of aerobic exercise.

So back to those good doctors at that hospital in Chicago. I came in. I explained the issue—that I had a job that kept me physically active, I had a healthy diet, never really ate junk food or very large portions, and I was incredibly concerned that I was continually gaining weight for what appeared to be no reason at all.

He processed nothing I said. He looked at my melanin and my Medicaid and decided that I was a poor Black fried chicken- and hog maws-eating caricature of an ignorant Aunt Jemima. To his admonishment that I not eat fried foods and change my diet and get exercise, I responded to the 400-pound White male doctor, “Sir. I can almost guarantee you that I eat healthier than you do. I already eat healthy. That’s why I’m here. I’m gaining weight, and it doesn’t make sense because of my diet and activity.” (And I mention his weight here not as fat shaming, but because: irony. So much hypocritical irony.)

Feeling desperate, I continued to list off my other troubling symptoms. He proceeded to tell me that he was writing me a prescription. He had run no tests. Taken no diagnostics. Done no due diligence. Ignored all patient history. And was writing me a prescription. He saw my melanin and my Medicaid and assumed I had not the education nor exposure to know what he was prescribing. He was wrong. I have a degree from Northwestern University and a career in a field that works closely with other disciplines such as medical physicians, psychiatrists and social workers. I work extensively with individuals with developmental disabilities and mental illness diagnoses. I knew what the prescription was. It was a psychotropic medication. And I knew the potential side effects included severe disruptions in psychological function. I literally would be putting my mind on the line.

“Sir. I know this medication, and the side effects are severe. You’ve not taken any psychological evaluations. You’re prescribing it for an off-label reason. I have no problem considering the medication. But if I’m going to put myself at risk, I just need you to tell me why you’re prescribing it.” He gave me no reason. He grew irate. He left the room and returned with a White woman doctor — his supervising physician — and they proceeded to angrily scold my refusal to do whatever they said like a toddler…and lecture me in the most infantilizing racist tone about not eating fried chicken and junk food. I was neither refusing to take the medication nor did I have a diet that regularly consisted of fried foods. But when all you see is melanin and Medicaid…

I was so traumatized by that experience that I did not attempt to seek medical intervention again for quite some time. It would be another four years before I would be diagnosed with lupus, Sjogren’s syndrome and fibromyalgia. The physician that diagnosed me sat in disbelief when he asked me if the previous doctors had run this test and that test, basic tests—and the answer to them all was “No, Sir. They didn’t.”

Lupus, Sjogren’s syndrome and fibromyalgia are three of many chronic autoimmune diseases referred to as “invisible illnesses” or “invisible disabilities.” Unfortunately, my story is not an unique fluke, but rather representative of the pervasive medical misogynoir that exists in America. Think Progress reported that “patients of color also received fewer recommended treatments for chronic illness, including HIV/AIDS, cancer, and heart disease. Differences in practitioner-patient interaction played a part in widening disparities.” And is any of it any wonder when one survey of White doctors revealed that some doctors don’t even believe Black people possess the ability to feel pain as much as White bodies do?

I think, for me, I often avoid outwardly identifying as disabled because frankly, in my experience, either no one cares or it puts me at even greater risk for things like loss of employment than I already am as a Black woman, especially in my field. I’ve already got a target on my back thanks to misogynoir. Adding disabled only sharpens the visibility of the bullseye. I’m a single mom that already feels like I’m running for my life. Publically or verbally identifying as disabled rarely protects me. It usually just makes me more vulnerable.

Someone might suggest that my not typically identifying as “disabled” is a form of internalized ableism. And that may be true for some who, in essence, utilize the societal privilege inherent in having a disability that no one can readily see (or at least not be able to see on a good day; bad days are a different story). But in my life, it boils down to what I can afford to risk. I have to survive. I can’t jeopardize my ability to feed my children. So I work hard to hide it and keep a roof over our heads because jobs have no incentive to believe the alternative: that I have a disability but can still be productive.

Thus, I rarely use the term to self-identify in the world. But every day, every pain, meds, every symptom I push and struggle through or some days don’t quite make it through like I hoped to reminds me in my private thoughts that I am disabled. I want to emphasize that my experience is just that — my experience. Does every Black woman with chronic invisible illness go through these things or deal with them the way that I have? No. Are Black women by and large subjected to and harmed by a medical system and community that is too anti-Black racist to effectively help us the way their Hippocratic oath demands that they should? Yes. And we all wade through that toxic water the best we can, the best we know how, to whatever varying degrees we are individually affected. Chronic illness is hard enough. Employer and medical racism makes everything so much harder.


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BGIM goes running…sorta

Last fall I went to the doctor for some seemingly small reason and learned that for the first time ever my blood pressure was elevated. It wasn’t in the danger zone and frankly I was more annoyed by the doc’s insistence that it wasn’t a “really” bad thing. Trust me, while my mother’s high blood pressure didn’t exactly kill her, a decade plus of high blood pressure wasn’t exactly a plus either when she was critically ill. I take things like high blood pressure pretty seriously since being Black, slightly overweight and having high blood pressure is one of those norms in the Black community that I am convinced plays a huge role in our leaving this dusty rock sooner than our white counterparts.

Since last fall, I have been quietly making changes in my eating habits, while I am not sure I will ever go back to the vegetarian life, meat continues to play an ever decreasing role in my diet. Most of the mindless snacking that I am prone to doing under stress has been replaced with more intentional eating and healthier snacks. Raw nuts anyone? I broke up with Starbucks and gave up my daily coffee like after work beverage and my digestive tract has been thanking me ever since.  The results after several months are that I am no longer gaining weight, my weight has stabilized and as I learned a couple of weeks ago, my blood pressure is back in the comfort zone.

Now I wish all these changes were enough but the truth, they are not. I need consistent physical activity and more importantly that extra 15 pounds that is comfortably settled in my mid-section has got to go. Mid-section excess is more than just unsightly when trying to look sweet and sexy, it seems it can cause health issues and I am finally willing to acknowledge that and actually do something about it.

The problem is that deep down, I am still the same person with the dubious distinction of failing gym in high school for three years straight. I hate gyms; I am not a work out gal. Yet 40 year old me no longer responds to just diet changes alone and while yoga is the one physical thing that I love, it is not enough. So I have been trying to figure out what I can do that can fit into my life more or less every day, and won’t cost me an arm and a leg. Enter running.

It seems most of my friends are into running, on the surface what is not to love? Relatively cheap, and it seems easy to do. After all, the last time I ran I am pretty sure it involved catching a train or bus in Chicago…back in 2002.

Getting ready to run
Getting ready to run

So yesterday I grabbed the ole man and we made our way over to the local cemetery that also serves as a local trail and broke out into a light jog. You can start laughing at this point. Lawdie B… that was really uncomfortable. For starters, I was jiggling, I was trying to focus on my breath and all I could notice was my ample derriere going up and down. OK. Then there was the twins known in adult language as breasts. Slap, slap, slap. How is that even possible, I don’t exactly have a rack, yet that up and down jiggle was actually hurting me. Lastly the knees, ouch squared. Let’s just say that run/jog ended quickly and instead I went for the power walk around the trail that ended with a mild sweat and some pressure in my legs.

Not a bad first step and thanks to Mother Nature deciding we should have rain today, I don’t have to try it again today. But make no mistake, I will try again…so BGIM went running, or was it more of a prance, gallop or sashay?

Change isn’t always easy or wanted but sometimes we do it anyway. So here is to new beginnings. Besides if running doesn’t stick, I can get some leg weights and take up prancercising instead.  

 

Note: I know for some people talk of diet/life changes is hard but as always this is just one Black girl in Maine telling her story. People need to do what works best for them and their bodies. I know my family history and I know what is best for me.

Cancer sucks and knowledge is power

The world is a little less bright tonight; a fellow Mom and blogger Susan Niebur lost her battle with breast cancer today. I only recently discovered Susan’s blog but read through it in a few days. She leaves behind a husband and two small children, she was also an astrophysicist! Susan battled inflammatory breast cancer which she was diagnosed with at 34 and fought for 5 years.

I didn’t know Susan and only recently became familiar with her story but it resonated deeply with me because of my own scare last year. At the time I wasn’t interested in sharing it publicly but I did share it with friends and family. Like many women during a monthly self-check, I realized something wasn’t right with my girls but there was no lump.  Due to a family history that my Mom had shared with me early in in life, I knew that I always needed to be vigilant about my breasts. In the end, I consulted with several doctors, had a mammogram and saw a specialist before we were comfortable ruling out that there was no problem. Yet at 38, I was told I will now need a mammogram yearly.

I remember sharing this with a few friends who seemed surprised due to my relative young age and even had a couple suggest nothing could possibly be wrong. Ladies, breast cancer does not always present as the lump we are told to look for and age does not exclude one from getting breast cancer. In fact looking back in the past several years I have known more than a handful of women who have lost their lives due to breast cancer and they were all under 40. The sad reality is often times breast cancer is more aggressive in younger women and inflammatory breast cancer is the most aggressive breast cancer.

I guess this is a bit of a PSA and something that was on my mind after hearing of Susan’s passing, but ladies it’s important to not only know our bodies but if something seems amiss get it checked out. If your healthcare provider isn’t taking you seriously, get a second or even a third opinion.  Your very life may depend on it.