Talking Race, Class, and Illness
Living with chronic illness, it is important that we see ourselves represented in medical literature, and that our pain is taken seriously. When it comes to ankylosing spondylitis, it is often seen as a "man's disease," and a "white person's disease" — which keeps diagnosis off the table for many women and people of color who are in pain.
Women's pain is taken less seriously
An October 2015 piece in The Atlantic called “How Doctors Take Women's Pain Less Seriously,” showed that, "Nationwide, men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes.”1 Women's pain is often taken less seriously, as we're seen histrionic, complaining, whiny, overly-sensitive, or too emotional. Or, we're seen as weak.
A 2001 study, "The Girl Who Cried Pain,” found that women are actually less likely to receive pain medication as well. The study found — get ready for this — that women are more likely to get sedation. Perform a cursory Google search and you'll see countless articles about women being told their pain isn't real.
Many people are still facing lack of care
Despite the way women are treated and the misinformation around AS being a "man's disease," I do largely feel seen. As a white woman, I do see myself in conversations around chronic illness — but the fact is many people do not. It's important to recognize this so that we can use the platform and privilege we do have to help provide that same visibility for others.
What of nonbinary or trans people? Are they being represented in conversations around health and wellness? What about the working class who can't afford to quit their job, take medication, or buy an upgrade to fancy airplane seats because their back hurts (yes, this is a "suggestion" I've seen time and again)? What about Black people and other people of color? Are they being cared for and given the same attention — both in hospitals and doctor's offices and in medical research — that they deserve?
Important right now — and always — is the fact that gender, race, and class all play heavily into chronic illness awareness and health treatment.
Black Americans are under-treated for pain
For example, the Proceedings of the National Academy of Sciences of the United States of America found that "Black Americans are systematically undertreated for pain relative to white Americans.”3
The Association of American Medical Colleges found that "Half of white medical trainees believe such myths as black people have thicker skin or less sensitive nerve endings than white people."4
The piece continued, saying, "As a nation, we must continue to reckon with the lingering history of racism in medicine. We in academic medicine have a duty to bring to light racist misinformation, stereotypes, and unconscious attitudes that contribute to disparities in patient care today. Dramatically reducing, and perhaps even eliminating, racial and ethnic disparities in pain treatment is an attainable goal — and a moral imperative."4
This disparity is unacceptable.
Trans people lack access
Gender plays a role as well. For transgender people, there are clear obstacles to care. This study found, "The biggest barrier to health care reported by transgender individuals is lack of access due to lack of providers who are sufficiently knowledgeable on the topic. Other barriers include: financial barriers, discrimination, lack of cultural competence by providers, health systems barriers, and socioeconomic barriers."5
Class is also an issue
Class, of course, is an issue. We need to continue fighting for access to real care (hint: this is largely done by voting for the right people). For community resources. For educational initiatives that inform people about their options when they get sick. And we need to help — via donations or sharing resources — when we can, too.
We need to listen to and fight for all people
While it's great that studies, institutions, and professionals are finding evidence of these disparities, we also need to listen to people when they share their stories of racism or discrimination at doctors' offices. We need to push for better medical research that doesn't just use a white male body as its default. And we need to fight for all people, especially those most egregiously discriminated against, to have access to care and representation.
We have to listen and ask questions even when it's uncomfortable.We live every single day with pain. We know the suffering it creates and the energy it takes. Ankylosing spondylitis isn't a "white person's" disease. And it's not a "man's disease." We need to make sure that when we're talking about our disease experience, we're being intersectional and open-minded.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?