You Spelled “Difficult” Wrong.
In my 49th year I discovered something new about myself: I’m a great self-advocate.
Er… medical self-advocate.
For a long time, I thought I was silently contrarian about what doctors said to me. But in my 41st year, I became a self-proclaimed self-counselor. It was the year I was diagnosed with Multiple Sclerosis. Wait. Scratch that. My rookie year was when my youngest daughter was two years old. That would be in my 39th year. She was having problems with her gut. I won’t get specific here, but all moms know the poop color wheel and the red flags of digestive issues. I took my daughter to a specialist.
“If you take your daughter off gluten, you’ll create psychological problems for her.”
“Digestive issues aren’t from food allergies.”
“It’s not life-threatening. We’ll keep an eye on it.”
I will just leave those comments here for now and assure you that I fought for my daughter. We’ll call that year the boot camp of “WTF did you just say to me?”
Anyway, in 2015, I had an MRI of my brain and a needle poked into my spine. What the doctors found finally gave me a reason for chronic pain and inexplicable cognitive issues. Multiple Sclerosis is one of those diagnoses I would hear about and immediately recall an old teacher, old aunt, a friend’s mom. Selma Blair. I would remember their cane or how they slept a lot. My young mind and the internet didn’t give me images or stories about MS. I was determined to find something or someone to be a positive guide through this footnote of my life.
I spent most of my time looking for a cure. There are none. The treatment options presented to me promised little, but had a long list of side effects. I jabbed needles in my hips and belly. These left welts on me, gave me heart-attack-like side effects, and one episode of rigors. These treatments felt worse than some of the MS symptoms.
In 2017, a medical journal published research on aHSCT for MS. HSCT is a stem cell transplant to reboot my immune system, where the disease lives (note: please don’t confuse this with stem cell therapy; they are very different treatments). I did a full 80s-movie-montage-style dive into anything I could find on HSCT. I went to the library, I went to Facebook, I read every white paper and newspaper article I could find. I found three world-renowned doctors who practice this treatment for MS in Russia, Mexico, and Chicago. The Chicago doctor was nearly finished with a trial for the FDA and was not taking any more patients. Russia was top of my list, but before I pursued my research there, I took a field trip with my sisters to the International Society of Hematology Conference in Atlanta. Doctors from a private clinic in Monterrey, Mexico, would be presenting at the conference. The founder is a Mayo Clinic Distinguished Alumni. That checked a new box for me. While in Atlanta, we met American patients who had been treated with the Mexican protocol.
Quick side note: I found a woman in my own town who had HSCT. And you’ll never believe this part: I found her at the same dojo where Marci and I met! Mexico was my choice. aHSCT gave me a 70% chance of stopping the progression of this disease. Halting progression was as close to a cure as I could find. I went to my specialists and told them my plan.
“Don’t do that treatment, we have drugs to make you comfortable.”
“Wait until you’re in a wheelchair before you do that treatment.”
“If you go to Mexico, you’ll come back in a body bag with no kidneys.”
There were several more comments from these medical professionals about Mexico that were appalling and full of bias I hadn’t experienced in the medical community. I assure you, I found new doctors immediately. Let me clarify: I found a neurologist who shares my desire for a legitimate, promising treatment that lets me feel in control of the plan.
I went to Monterrey in 2018 for 30 days. My MS-clad immune system was wiped out with high-dose chemotherapy and a fresh system was built from scratch with stem cells taken from my own bone marrow. I was released after 30 days and sent home with follow-up instructions for my oncologists.
But stateside, I was denied by several practices because they didn’t want to take on the liabilities of a patient who went to Mexico for treatment. I was called a “medical tourist”. I was asked by a doctor who had never met me if the doctor in Monterrey “made me go to Mexico because he knows the practice is illegal here and did he have his license taken away in the US?”
Sigh. These were the initial assessments of medical professionals in my own city. A large city. A well-known center of medical advances.
Anyway, after being refused by several oncologists, I put out a call to my new aHSCT community and was connected to an oncologist on the South Shore of Boston who recognized the liabilities to me, not them, if I wasn’t cared for after a stem cell transplant. This was a welcome encounter with beneficence. I remain with this doctor today.
I’m 5 years post-transplant. I have not relapsed. The damage done before aHSCT remains, but it’s not getting worse. I am managing it quite well, in my opnion. That was the goal. I have an opinion about my health and treatment options. I have a neurologist and an oncologist who listen and ask for my opinions about my health and wellness. We’re a team, the three of us.
Virgie Tovar (look her up) wrote a very simple line in an article about self-advocacy that sticks with me: “You shouldn’t have to be the solution to a problem you didn’t create.” She’s right. But that’s not the reality I live in.
I know you have stories like this. I know you’ve heard the same horrific statements from a doctor or two. I’m reminding you that you can say “that’s not okay” and “that’s not how I feel” out loud now. We can normalize a team approach with our doctors. We can encourage our friends to find a doctor who hears her after she calls you in tears because she’s in pain, but the doctors won’t believe her because the tests came back “fine”. You can tell her to find another doctor and don’t stop until she gets answers. Remind her that she has the right to feel good. Maybe tell her she has the power to be “difficult” at the doctor’s office until they write e-m-p-o-w-e-r-e-d in her chart.
Best,
Bridget
