My Pain is Real

This article was originally posted on That Fancy Life Blog 

CW: mentions of weight gain, intentional weight loss, dieting

The medical community has a deep dark history regarding the pain of Black women. Black women are seen as superhuman. The reason we are given this moniker is because no one seems to believe us when we say we are in pain. I have learned this the hard way.

Today I cried. I cried happy tears. I cried tears of anger. I cried tears of joy. And I cried tears of sadness. I was a whole crying mess. I was overwhelmed with a feeling of vindication and I was so excited about it. Now I bet you’re asking? What happened? What was wrong? Or better yet what went right? Before I tell you what happened today, I need to first tell you about what led up to the events of today.

I grew up on an animal farm and helped raise a variety of animals including pit-bulls, goats, sheep, and horses. I was a fairly active child and teen but rarely ever did long distance running. And when I say long distance running I mean I rarely if ever did any running. The few times I did run, my legs would start to cramp and I would quickly stop the running or jogging or fast walking that I was doing. So needless to say, since my pre-teen years I have had a disdain for running or generally any cardio exercise. In my mind exercise was equated with physical farm labor or correlated to painful cramps in my legs.

Fast forward to my college years, post baby, I wanted to lose weight. My friends tried to help me workout. They had great intentions and I wanted to exercise. But again as I would try to workout my legs, the cramps would come. My friends and family would encourage me to push through the pain and stretch out my legs more. Their encouragement and recommendations felt futile because the leg pain just would not subside. I resigned myself to thinking that exercise was simply not my thing.

As I grew older I continued to gain more weight. As I gained weight I struggled with diet and exercise. The diet part was fairly easy to change when I put my mind to meal prep but the exercise part remained my Achilles heel. 

As I grew older I continued to gain more weight. As I gained weight I struggled with diet and exercise. The diet part was fairly easy to change when I put my mind to meal prep but the exercise part remained my Achilles heel.

From age 12-36, I have struggled with these severe leg cramp like pains. I’ve been told by numerous personal trainers, doctors, and friends and family (many in the medical field) that I just needed to stretch my legs and work through the pain. Exercise is painful but as you train your body through exercise the pain will subside. I tried this. I worked through the pain but once the pain got intolerable I would stop cold turkey. I hired many different personal trainers. I notified them of the limitations of my legs. they would be mindful at first but as we continued to workout together they continued to push me as trainers are trained to do. This lack of respect for my boundaries would eventually lead me to stop working with them after I felt they were negating my complaints of pain. 

As time progressed this inability to exercise began to seep into my soul’s understanding of my self-worth. I saw myself as a lazy unmotivated person. A person who just would not overcome her fears and was simply a coward for not doing the work to exercise like I thought I needed to. 

This year I was more purposeful about utilizing my health insurance. I have United Healthcare thanks to my job at the North Carolina Coalition Against Domestic Violence. NCCADV pays for employees’ health insurance. This was my second full year of having adequate insurance in my adult life.

After trying to walk multiple miles a day, my legs continued to cramp up causing me excruciating pain. I refused to take “just stretch” as an answer anymore. I set up an appointment with my primary care physician and requested a podiatrist referral so they could figure out what was really wrong with me. 

On August 5, 2020 I went to my doctor for my annual appointment and demanded that I be referred to a specialist. I said I wanted to see a podiatrist because I believed that my leg pain was caused by the way I walked. She recommended that I see a sports medicine doctor. My appointment with Dr. Lee at UNC Sports Medicine was scheduled for Sept 4th. 

During my appointment with Dr. Lee, he asked me about my medical history regarding my bilateral leg pains. He listened to every word I said. He asked follow up questions. He answered every question I had about all of his questions. And finally he gave me a proposed diagnosis.

“I think you may have Chronic Exertion Compartmental Syndrome”. Dr. Lee, Sept. 4, 2020.

“Huh? What in the word is that” I asked. He explained to me that it is a relatively rare condition that exists in certain people where the soft tissue around the leg muscles are wrapped too tight around the muscle.

"The pain increases in intensity as the patient continues exercising. An athlete will discontinue the activity when the pain, muscle tightness, or muscle dysfunction becomes unbearable. Pain and tightness resolve after a rest period. Patients typically describe pain as burning, aching, or pressure. A patient may also complain of being unable to achieve the same level of exercise the day after symptoms occur. Symptoms occur bilaterally 70–80% of the time [7, 25, 29]. Other symptoms include numbness and tingling in the dermatomal distribution of the nerve running through the compartment or weakness of the affected muscle. A classic presentation of compartment syndrome would be a runner who experiences burning in the leg and numbness on the dorsum of the foot 15 min into a run. The burning and numbness resolve within 30 min of rest.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2941579/

Before he could make a definitive diagnosis he would first need to perform a pressure test on both of my legs. The test required him to check the pressure in each of my lower legs and then check it again after I went on a treadmill and walked until my legs began to cramp. We scheduled the appointment for the following Friday, September 11, 2020. I can’t lie y’all the test sounded extra scary. I was so scared to do the test that I called and canceled the test the morning of Friday, September 11th. I rescheduled it for the following Friday morning, September 18, 2020 which brings me to today – September 18. Today was my appointment. I was ready for all the injections and the pain that was to come. I got to my appointment right on time for 9:15Am. My nurse for the morning smiled and eased my anxiety by letting me know that although it was going to be a difficult test, I will leave here with answers.

I waited in the exam room for roughly 45 minutes until Dr. Lee, the nurse, and a student shadowing him entered the room. They entered with a rolling tray full of needles. Dr. Lee first made multiple markings on legs for where he would insert the needles. He then sprayed my right leg with numbing spray and inserted a needle with a numbing agent to numb the soft tissue in my leg. He did this twice on each of the sides of my lower legs. After waiting a few minutes for the numbing medicine to take effect, he then checked the pressure in two spots on both my legs. 

He wanted to make sure I didn’t see him stick the long needle in my legs so he used his arms to block my view. As he inserted each needle I hummed and groaned along with the music I was playing in my ear. As the doctor asked me how I felt I replied “aight, I guess.” He responded with “I can’t tell if you are being straight forward or sarcastic” and I replied “it’s both.” As he continued with each injection, I continued to hum out loud while digging my nails into my arm in an effort to distract myself from the pain. Singing was the pleasant distraction I needed. 

After taking the pressure in my legs, Dr. Lee said “Wow those are some high pressure levels.” I asked somewhat sarcastically if that was a good or bad thing. He replied it is both. It is good because it is a good indication that his diagnosis was correct but bad because the numbers were abnormally high. What is the average baseline pressure? The baseline pressure is usually between 15 mm Hg – 30 mm Hg in a “normal” person but the pre-exercise pressure was 50 mm Hg & 50 mm Hg in my right leg and 60 mm Hg & 57 mm Hg in my left leg. Even though my pressure numbers were so high, Dr. Lee still wanted to do the exercise portion of the exam so that he could complete the test and fully verify his diagnosis.

If you are seeking to center your soul during a particularly scary medical procedure, listen to Leon Bridges’ song Coming Home. As the song came to an end, Dr. Lee finished his last injection. Now it was time for me to go on the treadmill.

After wiping the blood off my legs from the injection spots, the nurse wrapped my leg with a lime green bandage. I put on my Machel Montano playlist to jam too as I began walking. I walked on the treadmill for about 7.5 minutes at a speed of 3.5 before my legs began to ache and my feet started to feel numb. Within a minute of being off of the treadmill, Dr. Lee quickly took the pressure again on the two spots on each of my legs. I heard him say “80 & 94” for the pressure in my right leg and then “107 & 87” for the pressure on my left leg.

The diagnosis was complete. It took 34 minutes to complete the test & validate 20 years worth of pain.

Dr. Lee told me that my next step would be surgery. I would need to have a surgical procedure done called a fasciotomy on both legs. This would involve cutting open the inflexible tissue encasing each of the affected muscles in both my legs. The surgeon’s office will be scheduling an appointment within the next week. This was just the beginning.

As I drove back home I tried my best to feel the feelings I was feeling. But somehow the feelings stayed buried as the thoughts ran around in my head. I knew I was emotional but couldn’t seem to put into words what I was feeling. As I pulled up into my apartment complex, I began talking to my mom on the phone. I told her that the diagnosis had been confirmed and I would be having surgery on both of my legs soon. My mom was happy and excited for me . As she spoke I began to cry. Like the walls of a dam had fallen away, my tears began to gush out of my eyes.

At that moment, all of my emotions boiled over. As I sat in the car, tears flowed steadily down my face. I told my mom that I felt so overwhelmed with joy, sadness, and anger.

I was joyful because I finally knew what was wrong with me. I was sad because it took so long to get the answers I needed. I was angry because for decades I have internalized so many negative thoughts about myself that I have gathered from those doubting my pain and telling me to just grind through the agony.

The medical community has a deep dark history regarding the pain of Black women. Black women are seen as superhuman. The reason we are given this moniker is because no one seems to believe us when we say we are in pain. I have learned this the hard way.

“…having untreated pain can have long-term physical, psychological, social and economic consequences…pain that’s dismissed causes patients to have less trust in the medical system.”

https://www.today.com/health/implicit-bias-medicine-how-it-hurts-black-women-t187866

This superhuman strength of Black women is not just related to the medical community but to our larger community. Not only was my pain not believed by my previous doctors but also by my family, my friends, and my various personal trainers. No one thought outside the box. Why would anyone think I could be suffering from a rare thing like Chronic Exertion Compartment Syndrome? For so many years I have doubted myself and my pain, but thanks to the access to healthcare I finally have a diagnosis. My feelings have been validated with my diagnosis. Having health insurance has changed my life. About 44 million people in this country have no health insurance, and another 38 million have inadequate health insurance.

Everyone deserves healthcare. It should not be limited to those with access to wealth or employer funded healthcare. So many lives just like my life can be transformed and saved with meaningful access to adequate healthcare.

This is only the beginning of my journey with my new diagnosis. I am hopeful that only good things will follow and maybe one day I will be able to run a mile with ease.

Written by: Nisha G. Williams

Nisha is a driven and accomplished North Carolina attorney who has aspired for justice in her state for ten years and counting. She has served as an advocate for her clients in criminal and family court. Walking and writing are two of Nisha's favorite pastimes as she finds her new path in life as she manages life with an empty nest.