For over a decade, I’ve spent time, money, and emotional energy sitting in doctor’s offices in futile attempts to find relief for my chronic pain. Detailing how it barred me from day-to-day activities never seemed to matter.
A majority of the appointments ended the same way: My pain was attributed to me being overweight, and I was sent on my way with a prescription for 800mg Tylenol, a generic print-out of stretches, and a heavy feeling in my chest.
Sadly, I’m one of many with this experience. In fact, several studies,
One way we’ve seen this show up recurrently is through the way Black folks — particularly Black women, Black AFAB (assigned female at birth) folks, and Black people who are perceived as feminine — fail to receive the necessary treatment, care, and compassion when it comes to our pain and healthcare needs.
KáLyn Coghill, adjunct professor, doctoral student at Virginia Commonwealth University, and digital director for me too. International, spoke with me about her experiences with chronic conditions and disability.
She detailed her years-long struggle in getting a diagnosis of two rare skin diseases due to consistent dismissal of her pain.
“I felt like a lot of times, some of the doctors that I had felt like I was overreacting because I wasn’t displaying my pain in a way that is normal to society, like crying hysterically,” she said.
This led to lasting mental health effects in addition to her physical health symptoms, as well as the need to converse about having a lifelong disability despite her current appearance.
“I’m always worried that they’re not going to believe me or they’re not going to give me the proper care because they don’t think I necessarily need it,” Coghill shared.
Coghill shared that she began seeing symptoms back in 2013, but doctors incorrectly diagnosed them as common ailments like ingrown hairs or folliculitis.
It wasn’t until two years later when an OBGYN suggested she see a dermatologist that she was officially diagnosed with Hidradenitis suppurativa (HS), and four years after that when she received the second diagnosis of Pyoderma gangrenosum (PG).
What Are Hidradenitis Suppurativa And Pyoderma Gangrenosum?
Hidradenitis suppurativa, a chronic condition that disproportionately affects Black women, results in painful bumps to form under the skin.
The bumps can range in size from peas to marbles, and have the potential to drain pus and leave lesions or scarring. Most often, the bumps form in sensitive areas where skin folds or rubs together, such as the groin area, breasts, or armpits.
Pyoderma gangrenosum is a rare and chronic skin condition that is classified as being debilitating, starting as small bumps or blisters that eventually erode into open lesions, often occurring on the legs but can appear anywhere on the skin.
The cause of PG isn’t fully understood, but it is associated with other systemtic conditions, like
Coghill shared that these conditions not only wreaked havoc on her body, but had serious implications on her mental health.
“It took a lot for me to just even get the dermatologist that I have now — who’s been really great, but it took years for me to get the proper care that I needed, and I still have a lot of trauma as it pertains to going into doctors or going to the ER,” she said.
Coghill’s skin diseases affected both her skin and her joints, leading to her usage of a cane, and because of the way Pyoderma gangrenosum manifests, it affected Coghill to the point where getting out of bed wasn’t an option.
This made it difficult for her to remain optimistic when there were no signs of relief in sight.
“I mentally suffered a lot with suicidal ideation because I was so sick, and no one could figure out what was going on and it just felt like I was living to die. It felt like nothing was getting better, and no one cared about what I was going through.”
“Every day I was in excruciating pain, and there was no relief. And when I tried to seek relief, I was met with a lot of barriers.”
A Bittersweet Turning Point
In addition to symptoms that impact your day-to-day, chronic conditions like PG have the potential to threaten your life.
Because of the deep, open sores that PG causes, infections are common.
Coghill was forced to reckon with this potential threat during multiple hospital stays. Due to the several open wounds that PG can cause and her weakened immune system, she contracted an infection called Pseudomonas and dealt with two separate bouts of sepsis.
“There were a couple of times where they just thought that I wasn’t going to make it because no antibiotics were working,” she recounted.
Fortunately, circumstances shifted and she pulled through after she was treated with steroids. This led to her infection dwindling and her ulcers getting under control.
A common side effect of steroid use, especially long-term, is weight gain. While this isn’t inherently an issue, this resulted in Coghill gaining 150 pounds within six months. Because of the pre-existing stress on her joints from her chronic conditions, this rapid shift in weight rendered her effectively immobile.
Coghill said that the steroid treatment was “bittersweet.” She was no longer bed-ridden and had less debilitating flare-ups, but was still in immense pain and unable to perform daily tasks like bathing, driving, and walking unassisted.
Because of the stress her body was under due to these chronic conditions, Coghill recently opted to receive bariatric surgery in hopes of reducing pressure from her joints.
“I wanted to be able to have some type of semblance of my life before I got sick,” she said.
In her quest to find answers, she joined Facebook groups for people experiencing similar things, and she found that there was a consistency to the folks who seemed to get faster medical assistance and answers.
“There were plenty of people who had the same skin disease that I do that were white and were receiving all types of care. But for me and other Black people, we’re looked at as being dirty.”
The impact of racism, sexism, and ableism begin at the structural level of our society. This means that the biases occur throughout varied institutions and within society.
Blacks folks deal with bias day-to-day — through social intersections and even our perspectives of ourselves, our culture, and our experiences.
This cause-and-effect breakdown can be applied to all experiences of discrimination at the institutional level, particularly systemic racism.
And, unfortunately, the experiences that Coghill and I share are just a couple of many that show our healthcare system isn’t exempt and harmful practices are throughout the system.
The effects range from policies at the government level all the way down to the way an individual clinic chooses to structure their intake forms.
Race served as one area that fell prey to provider bias and Coghill’s weight was another. She spoke about her experience being dismissed for being fat by medical standards on multiple occasions.
BMI has many times been discussed as an antiquated and
In addition to having your health symptoms untreated, consistently being undervalued, dismissed, and ignored can have damaging effects on your mental health and self-esteem.
Coghill shared how being recurrently told she wasn’t actually feeling as badly as she proclaimed served as a form of gaslighting, leading her to question her own experience.
“I would be sick or not feeling well, but I wouldn’t really say anything because if the doctors didn’t believe me, then clearly I must be making it up,” she said.
“I felt like, ‘Well, they’re saying that I’m exaggerating. Maybe I am. Maybe my pain isn’t real. Maybe I’m making it all up.’”
Because of the way racism and racial biases infiltrate each part of our society, shame and judgment can erupt from within.
Ignoring your needs creates a cycle of suffering, all because we want to continue to handle things on our own.
This hypervigilance doesn’t automatically waver for folks with chronic conditions and can be especially difficult for folks dealing with invisible or unseen disabilities.
Often when people hear the word disability, a person who is very apparently in need of assistance comes to mind. However, there’s a needed importance in understanding that a person’s appearance has no bearing on their overall health.
“I’ve always been extremely high functioning and independent, so it’s difficult for people to understand that, yes, I do exhibit these traits. But actually, I’m sick. And I will be sick for the rest of my life,” Coghill said.
Even though several people are navigating chronic pain and illnesses without “looking like it.”
Coghill and I discussed similarities in our experiences of navigating consistent misunderstandings about our capacity due to the way we show up for work and community.
Black women have navigated expectations — whether directly imposed or internalized — to carry the world on our shoulders. We’re thought to have the ability to withstand incredible amounts of pain while caring for our partners, our children, our community — all without breaking a sweat.
Studies suggest that shouldering these expectations can lead to adverse mental health effects, and a
Coghill and I discussed our difficulty in taking advantage of the tools available to us because “someone else needs it more.”
Folks close to us have used tough love to remind us that there’s no weakness in listening to your body’s needs, despite what society has pushed on us thus far.
“Then you find yourself in situations where you need to ask for help, but you don’t want to because you don’t know how you’re going to be perceived by people,” Coghill said.
Coghill is currently in remission. While she isn’t completely rid of her symptoms (or the co-occurring chronic fatigue and depression), they’re much more manageable now.
After years of seeking answers and treatment, she’s finally at a place where she can walk without mobility aids and begin to navigate her life with significantly less pain.
“I recently went on a trip to Texas, and I was able to walk from terminal to terminal — that’s the first time I’ve been able to do anything like that since I got sick,” Coghill said.
However You Need Support Is Okay
For as many people and personalities that exist, there’re just as many varied desires for support. It can be easy to assume that you’re required to accept whatever is being offered to you, because it comes in good faith.
Coghill shared that this lesson was difficult during her health journey. “I had to learn how I needed to be supported, because it was different from how I needed to be supported before, and that for me was probably the hardest part.”
“And I’m okay with changing what my needs look like,” Coghill said.
The Importance In Connecting With Your Providers
Studies suggest that a good connection with a provider can improve your health outcomes. Coghill’s experience aligns with this idea and she’s ensured that where possible, her current doctors are Black women.
“My current therapist is also a Black woman, my psychiatrist is a Black woman. I don’t play — I need to have that nuance. They need to be able to understand me as a Black woman, so I make sure to go out of my way to find someone who looks like me.”
Cultural Competence In Healthcare Is Vital
Because of the continued presence of medical bias, Coghill believes addressing societal inequities during training could be a solution.
“[Medical school should be] 50% of you learning about people, systems of oppression, and how medical apartheid works. How some of these medical procedures are inherently racist and the way that you are looking at certain bodies is sexist,” Coghill said.
“All of these different types of isms that happen in the medical field that are overlooked because they don’t think that these systems of oppression matter… I think that taking gender and sexuality and courses on racism should be required.”
Asking for help is imperative
Coghill talked about her lifelong independence and high-function despite her varied physical and mental health diagnoses. This experience with her chronic health conditions forced an opportunity for her to learn to ask for and accept help.
“When you’re really sick or when you have chronic illnesses, your spoons are low. You sometimes don’t even have the strength to fight back. You need people to fight for you,” she said.
“I need people to fight for me sometimes. Sometimes I need somebody to be that liaison for me. I need somebody to be that buffer. I need somebody to be the person to speak on my behalf because I just don’t have the energy to do so. And then that’s okay.”
She was transparent in saying that previously, she would wait until she was at her breaking point before even considering help.
Coghill says it’s a work in progress, but she has the ultimate goal of reaching out to others in the beginning so burning out isn’t even an option.
Listen To Your Body
Recurrently being told that what you’re experiencing isn’t real can have lasting effects, regardless of the severity of your situation. Coghill encourages folks with medical concerns to seek additional opinions if they aren’t being given the proper level of care or attention.
“Get second, third, fourth, fifth, sixth, seventh, and eighth opinions. See multiple doctors,” she said.
“If you go to a doctor and the vibe is off, go to another one. If you go to a doctor and they prescribe you some type of treatment and they don’t explain it to you — go to another doctor. If you go to a doctor and when they come in, they take only five minutes to look at you and they give you a diagnosis — walk out of the room.”
Being dismissed by professionals can increase this likelihood, but it’s important to trust your gut.
“I learned that I have to listen to my body and not listen to what other people are saying my body is doing. Because I know what my body is doing. I’m the one that’s in it. I see the changes, I see when things are going wrong,” Coghill said.
Coghill, a current PhD student, college professor, and full-time nonprofit worker, has endured more than many.
Throughout the years it took to get diagnosed and proper treatment, she learned more about the importance of cultural competence in healthcare and the vitality of asking for and receiving help.
Because we’ve historically been assumed to have the ability to withstand more than others, both physically and emotionally, being dismissed and overlooked are common occurrences for Black folks dealing with health issues.
It took almost 10 years for anyone to actually hear what I was saying and suggest and refer me out for a set of x-rays and an MRI as a precursor to potential supportive treatment options.
The concept of assumed resilience and unwavering strength is one that’s dangerous. It gives the world an out when it comes to responding to the extensive and recurrent trauma that we deal with on a daily basis under the guise of supporting our strength.
We’re strong because we’ve had to be, and that doesn’t rid our necessity for humanity, softness, and care.