The room was quiet. I was looking out of the window, tears streaming down my face, feeling utterly defeated. A year and a half before, I had been diagnosed with sarcoidosis, an autoimmune disease that causes granulomas, or clusters of inflamed tissue, to form throughout the body. It most commonly affects the lungs but can also affect any part of the body, and can sometimes become quite severe if not properly treated. Now, I felt as though I was looking down into a pit that was giving me a glimpse of my future, and it was terrifying. Months ago, I was a CrossFit athlete. In class, people often looked at me as experienced, strong, and skillful. Strength training had become part of my identity. Often, the best part of my day was sweating it out at the gym. CrossFit always made me feel confident and capable.
In some ways, I was channeling the Agojie, an elite all-female military regiment in the West African Kingdom of Dahomey. Understanding oneself deeply was central to their preparation for battle. Similarly, learning about myself on the gym floor helped ground me when so much felt out of control. The stronger I became, the more I wanted others to experience that feeling. I planned to pursue my CrossFit Level 1 certification so I could train people myself. Six months later, that wasn’t an option. I often needed a cane to help me get around. Sometimes walking around my own home was draining to my nearly nonexistent energy reserves. I felt like I had lost a large piece of myself, and I was losing more by the day.
Now I had a new fight. The last time I tried to take a walk down my block, it left me in pain for days. Pain wasn’t even the main issue. Being depleted of energy was the biggest problem. Energy economics was a feature of my life; I calculated how much energy was required to complete even the smallest task. Did I have the energy to take a shower and prepare breakfast? If I wanted to go to dinner with friends, would I be able to drive myself home? Or if I rode to an event with other people, would I have the energy to stay as long as they wanted? Not strategizing my energy to the last joule was detrimental and sometimes dangerous.
Now, I was sitting in my doctor’s office in tears. My doctor sat confused at the opposite side of the room. She seemed to think she was giving me relatively good news. My bloodwork looked good, and she believed the treatment was working. Her advice was to see pain management, and that no adjustment in treatment protocol was warranted.
She asked me, ”Why are you crying?” I said, “I work and then go to bed, and that is all I have the energy for. I have no life. I spend my weekends resting for the work week. You have just told me that this is what I can expect from now on. How else am I supposed to feel? I can’t continue to live like this.” “Exercise is surprisingly helpful. Water aerobics would be good for you.” Seriously? Some days, I barely had the energy to walk from my bedroom to my office down the hall. The previous month, I had been enrolled in PT, and that proved to be too much for me, but now I’m supposed to work a full day, and then somehow find the energy to go to the gym and do water aerobics? Were we existing on the same planet?
She later insinuated that I might have fibromyalgia. For context, fibromyalgia is a disease of exclusion. It’s a diagnosis that comes about when all other avenues have been exhausted. I had structural issues and an autoimmune diagnosis that commonly presents with pain. She had done a series of tests, MRIs, PET Scans, and some of them came back with results that pointed to disease progression, but because my bloodwork looked normal, that was what she focused on. So she landed on fibromyalgia as the problem and concluded that her treatment was more than sufficient.
According to medical documentation, labs should never be the only determining factor in treating sarcoidosis. Symptoms and imaging are often the most important determining factors. (ATS/ERS/WASOG Statement on Sarcoidosis, 2020; AAFP Sarcoidosis Review, 2016; FSR Sarcoidosis Treatment Guidelines; State-of-the-Art Treatments Review, 2022) I was exhausted, in pain, my PET scan indicated severe inflammation, and everything about my life was abnormal for a person my age. But my doctor zeroed in on my bloodwork, which was the indicator she was looking for. Since that was largely normal, that was enough for her.
This is nothing new for autoimmune patients; it is the same old tune. Ask any of us, and you will get a similar story. Drink more water, exercise, cut out stress, sleep; while those things are important, they aren’t solutions to the core issue. There is a common thread: ”Get used to suffering because that is your lot in life.” So doctors make you feel unreasonable, “Why are you complaining? I told you, you are doing well.“
Do I think my doctor was uncaring? No, she personally called me when my father passed away a few months before. She ordered many tests and wasn’t completely dismissive. The problem came when the results weren’t what she was expecting. One autoimmune disease rarely looks the same in two patients. I am not demonizing my doctor. However, you need a doctor who is knowledgeable about your disease and is willing to put in the effort to find the best solution for you personally.
I knew I could fight her on this. After all, she worked for me. However, fighting her and pushing her required energy, both physical and mental. Being a patient with a chronic illness means you are always at war, and the exhausting injustice is that you have to fight hardest when you have the least left to fight with. Did I want a doctor I had to push to get me proper treatment? I had gone into the appointment with hope. I thought I finally had the results I needed for my doctor to move forward with better treatment options. Now I saw I needed to fight her, along with the daily battle of life with this disease. I just didn’t have it in me. So I sat, looked out of the window, and cried. That’s all I felt I could do.
She wanted me to come back in three months. Why? So she could tell me the same thing and change nothing? Blame the next round of symptoms on something else? I didn’t have the energy to waste my time again. I got up, tears streaming down my face, and walked out of the room, never to visit it again. Left up to her, in another 6 months, where would I be? Permanent damage to my organs? Neurological damage? What was next?
I cried all the way home. When I got home to discuss the appointment with my roommate, I burst into uncontrollable sobs and spent the next few hours fluctuating between anger, sadness, and defeat. I just could not stop crying. I remembered this wasn’t the first time I had seen something like this. My mother had been diagnosed with cancer when I was in my late teens. After surgery to remove the damaged lobe of her lung, her doctor looked at her biopsy results. Two lymph nodes had cancer, and the others were clear. He said he wasn’t going to do any other treatment for her at that time. Just two years later, she was gone. This situation played back in my mind. My mom didn’t want to do chemo, so she didn’t fight for it.
I had received similar information from my doctor. My doctor felt good about her treatment decisions and was willing to dismiss some obvious factors in favor of taking a more passive approach. A passive approach could result in further, even permanent damage to my body. I wanted my doctor to give me better treatment. Just as mom deserved better, so did I. I was going to have to fight for appropriate care. I felt I didn’t have any fight left. I was broke, my father had just died, and my energy was in the toilet. I felt that I was frozen, looking down the barrel of a gun. I needed to get out of the way of this oncoming bullet, but she wasn’t the doctor to assist in this.
My roommate came to my room later that night and asked how she could help me and who we should call. I said, ”No one. Nothing. I just don’t have the energy to think about this right now. I don’t have the fight in me.” It wasn’t like me to give in to a fight. Since I was a child, I have had the instincts of a protector. Defending my smaller, more frightened classmates was a regular occurrence in my elementary years. That instinct has stayed with me all of my life. During this time, my dad was frequently in the hospital, and some of his doctors hated to see me coming. I fought fiercely to make sure my dad was well cared for. One of his caregivers called me a lioness because I didn’t put up with much foolishness. Many of my family members have told me that they want me with them when they grow older and get ill. Now I needed to carry the lioness identity for myself and go into battle.
Like the Agojie, I needed to put on my battle mantle. They were skilled in hand-to-hand fighting, knives, guns, even bows and arrows. However, what made them most formidable wasn’t a weapon — it was their training, discipline, and identity. I have heard some people say that we shouldn’t refer to chronically ill persons as warriors. Chronically ill people are patients who shouldn’t have to fight. While this is true, unfortunately, that’s not a luxury most of us have. Few of us have someone to fight for or with us. We have to gird ourselves with whatever tools we have at our disposal and battle it out with doctors, insurance companies, and even well-meaning loved ones on our own. Now it was my turn. I needed to fight.
The Agojie weren’t warriors because the battle was easy. They became warriors because the situation demanded it. My circumstances demanded it. I thought of my mother, I thought of her fight and what she would want me to do. By 5 AM the next day, I awoke ready for battle. Being a patient with a well-managed chronic illness requires a fight.
In the months that followed, I fought insurance battles and called numerous rheumatologists until I found one who was knowledgeable about my disease. I went into the first appointment prepared to spar, but less than 5 minutes into the appointment, she could see that I needed a new treatment protocol. I didn’t need to push her. She was going to fight alongside me. She started me on a new prescription right away and put in a pre-authorization request for more advanced treatment. I had been heard.
I went to my car and cried, this time happy tears. There was new hope, a new beginning. Today, I am walking without a cane. I’m easing my way into exercise again with yoga and light walking. I am able to spend time with friends and family. I feel like I have some of my life back. The battle isn’t over. I still have to fight this disease. I’ll need the same tools as the Agojie: training, discipline, and identity.
Despite my penchant for certain kinds of battle, I am not particularly unique. The battle for good healthcare is absolutely necessary. Getting back to perfect health isn’t an option for all of us, but better health and medical care are a possibility. The Agojie can serve as inspiration for others just as they have served me. Armed with the right tools, research, self-awareness, and a resilient and fighting spirit, patients can get what’s needed for the best possible health outcome.
