I sat across from the doctor and with my husband by my side, began to explain the awful, painful, strange, symptoms I was experiencing. After answering some questions, the doctor stared at me blankly. He raised his eyebrows and said, “Wow. Really?” in disbelief, questioning my statements. He then turned to my husband and laughingly asked, “What do you think about all this?” waving his hand towards me, as if I was some crazy person making it all up.
My husband was at a loss for words and could not think of a way to respond. I was the one coming in to be seen, not him; he was just there to support me. The doctor made me nervous, made me question myself, question what I was feeling. He brushed me off by stating, “You are just having migraines” and gave me a prescription for a generic migraine medication, emphasizing to only take it one to two times per week. He then told me to come back in a couple of months.
I was in tears as I left his office. He had been so cold, so dismissive of the pain I was experiencing on a regular basis; the pain that was destroying my life; the strange, worrying symptoms that left me terrified. I remember telling my friends that I kept descriptions such as “husband,” “mother,” and “father” with telephone numbers in my phone just in case I ever passed out and someone needed to be contacted. I felt that I would collapse at any moment from the light-headedness and dizziness I was experiencing on a regular basis.
I would end up going to another specialist who requested MRIs of my cervical spine. Turns out it wasn’t just migraines; I had a tear in one of my cervical discs, bone spurs, and arthritis. I told the doctor what had occurred at the neurologist appointment and he did not seem surprised. He explained that, “Doctors see a young woman complaining about pain and headaches and just want to throw some pills at you to shut you up.”
I was glad to have my experience validated but it wouldn’t end there. That neurologist may have been the first to dismiss and minimize my pain but he certainly was not the last doctor to do so. And it went further than age and gender, my ethnic and cultural background also played a large role in how I was treated and perceived by medical professionals. In the years that followed I would come to know how being a young, woman of color coping with chronic pain impacts medical treatment.
Studies have shown that Latinos are twice as likely to not receive pain medication in comparison to non-Latinos even when reporting similar amounts of pain. In fact, both Latinos and blacks are 28% less likely than whites to receive narcotic pain relieving medicine when presenting in the ER. Furthermore, 45% of women dealing with chronic pain, in a 2014 survey, reported that they were told, “The pain is all in your head” by medical professionals. Studies show that men are more likely to receive pain relieving medication and more rigorous medical work up while women’s symptoms are taken less seriously and are given sedatives instead. In fact, even when women and men express the same pain score, women are more often given opioids rather than the pain medication offered to their male counterparts. You can read one woman’s heartbreaking story here.
Knowing this now, it is really no surprise that treatment for my medical issues were prolonged and my pain dismissed over and over again. Going over my medical chart, I remember reading dialogue between my PCP and specialist about how they hoped my health issues would resolve once I graduated and no longer had “stress” from school, as if my symptoms would magically disappear once I got my degree. Another doctor described me as “intense” and blamed my symptoms on my lifestyle i.e. overweight, stressed out, female grad student.
In 2014, I had my gallbladder removed. I was so sick after surgery. For over a year, I couldn’t eat anything besides chicken and rice. I was throwing up constantly, nauseated, so bloated. I looked 8 months pregnant, and either unable to use the bathroom or constantly on the toilet. I was in constant agony and felt close to death. I had to lose over 70 pounds before my symptoms were taken seriously. I remember finally finding a compassionate, caring doctor that took my pain and symptoms seriously who urged my gastroenterologist to test me and treat me for a specific stomach infection multiple times but he refused believing there was no way I could be suffering from such a disabling illness.
It turns out I did have that infection but it took over a year to get the diagnosis and seeing 4 different doctors. It is no surprise that the PCP and gastroenterologist that finally treated me and took my symptoms seriously were both women of color.
Living with chronic pain and illness means that I am constantly seeing my primary care doctor and getting worked on by different specialists. I am weary of doctors now. I am careful with my words and expect little from them. I trust my primary care doctor because she listens to me and gives me time but I have little faith in the medical community.
In 2015, I ended up in the ER, bleeding heavily from my period and so sick and in pain I couldn’t walk. I had been suffering from debilitating painful periods for years and had always been told it was normal and to live with it. The ER doctor spent less than one minute with me before telling me I needed to see my gynecologist and refusing to give me pain medication.
I ended up with a gynecologist I thought I could trust but after seeing her for 6 months and trying multiple types of birth control to control my symptoms she seemed to give up on me, telling me that I was depressed. She talked down to me, explaining Cognitive Behavioral Therapy (CBT) to a trained mental health professional (I am a social worker that provides therapy and have been trained in CBT)! When I explained to her that I had been in therapy for years for PTSD and had excellent rapport with my therapist, she sharply responded that rapport is not what matters.
Interesting to note, rapport is one of the main factors in determining success in therapy. That was the last time I saw her. I have learned that my time is just as valuable as doctors’ and I will not waste it on people who doubt me and don’t take me seriously. In the end, I was seen by another gynecologist and both she and my primary care doctor have given me a working diagnosis of endometriosis. Although they are sure that I have it, endometriosis is diagnosed through surgery and I am not willing to have surgery given the consequences I experienced when I had my gallbladder removed. I would rather live with the pain and manage the symptoms with medication.
Medical professionals have told me countless times, “You are too young to have so much pain.” or “You are too young to have seen so many doctors.” Youth has nothing to do with being sick. Doctors think that young people are vibrant and healthy and bounce back from illness or injury but the truth is being young doesn’t keep you from being sick. I wish it did. Honestly, some days I feel like a young person living in an old person’s body.
Living with chronic illness and chronic pain is difficult but being a young woman of color makes it even more difficult. Doctors are people, not special people, not above anyone else, just people. And they work under assumptions and biases just like everyone else. The problem is that doctors hold power in society and with power comes responsibility. The medical field has a long way to go in overcoming these barriers but bringing awareness to these issues is a way to work towards improving treatment for women of color.
This does not mean that there aren’t caring medical professionals out there. They exist and I know a few. But the hard truth is that being a young woman of color greatly impacts how doctors view you and treat you. It takes time, energy and advocacy on the patient’s behalf in order to overcome this and we all know that those living with chronic pain and illness do not have a lot of energy to begin with.
I know I am exhausted and frustrated dealing with this. I have an upcoming an appointment with another specialist soon and all I can do is hope for the best. Now, with multiple, measurable diagnoses doctors are much more likely to take me seriously but they still talk down to me, minimize my pain, point out my age.
But I will no longer let doctors dismiss me, and belittle me. If I don’t like how they treat me, I don’t go back. I have a smart, empathetic Harvard graduated doctor on my team who supports me and understands my disabilities. If you have experienced stigma in the medical field as a young woman of color, stand up for yourself, find a medical professional who believes you and don’t waste your time on doctors who judge you for being who you are.