You spelled “difficult” wrong

In my 49th year I discovered something new about myself: I’m a really, really, really (seriously) good self-advocate. 

Er…medical self-advocate. 

I became this self-proclaimed self-counsel in my 41st year. The year I was diagnosed with Multiple Sclerosis. Wait. Scratch that. My rookie year was when my youngest daughter was just two years old. That would be in my 39th year. She was having problems with her gut. I suspected a gluten sensitivity. I won’t get specific, 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”

“Digestive issues aren’t from food allergies.”

I will just leave those comments here for now and assure you that I fought. We’ll call that year the boot camp of “WTF did you just say to me?” Let’s move forward to 2015.

Following a series of MRIs and a needle in my spine, I was finally given a reason for the chronic pain and inexplicable issues with cognition and balance throughout my life. Multiple Sclerosis is one of those diagnoses you hear and immediately recall a teacher/aunt/friend’s mom/Selma Blair and then think, “Oh shit! She’s going to walk and talk funny and sleep a lot.” Someday we can go over these things, but for now, let’s stick with the medical advocacy part of this story.

I spent many days and evenings throughout the next year looking at treatments to cure me. There are none. The treatment options presented to me promised little, but have a long list of side effects. I spent a year poking needles in my hips and belly. Most injections didn’t seem to do more than leave welts on me. Some days I felt like I was having a heart attack after an injection. I had a rigor-like episode that left me in bed for a couple of days. These treatments felt worse than some of the MS symptoms.

In 2017, I learned about aHSCT for MS in a medical journal. This is a stem cell transplant to reboot my immune system (where the disease lives). I did a full 80s-movie-montage-style dive into researching this treatment. I went to the library, I went to Facebook, I read every white paper and newspaper article I could find. I found three, world-renown doctors who practice this treatment for MS and they are in Russia, Mexico, and Chicago. The Chicago doctor was nearly finished with a trial for the FDA to have aHSCT for MS approved in the United States, so it was too late. 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 and was able to meet the doctors from a private clinic in Monterrey, Mexico. While there, we also met American patients who had been treated with the Mexican protocol. I also met–quite by accident–a woman in my own town who had HSCT years before. 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. I was no longer going to settle with medicines that didn’t even offer this hope. 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.” 

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. You can read more about it here.

I assure you I found new doctors immediately. Let me clarify: I found a neurologist who shares my desire to find a legitimate, promising treatment that allows me to 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 back 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. 

Upon return to Boston, 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 city. This was worse than when a male doctor in Chicago told me he had seen a similar pair of ankle boots as I mine on a sex worker at a walk-in clinic downtown. I was seeing him about a UTI. This was my first encounter with mysogyny. Or that time an ER doctor sent in a social worker to make sure I wasn’t using my daughter to get attention because I was convinced my toddler had a broken leg and the first doctor I saw said she didn’t. She did. The second doctor put her in a cast and kept her for observation overnight.

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 welcomed encounter with beneficence. I remain with this doctor today.

I’m 5 years post-transplant and I have not relapsed. The damage done before aHSCT remains, but I am managing this damage quite well, in my opinion.

And that, right there, is my point: 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 didn’t create this culture of believing what I am told, swallowing what I am prescribed, and consulting with only those my insurer approves. But I have to be the solution. That’s my reality.”

I know you have stories like this. I know you’ve heard the same horrific statements from a doctor or two. I know you know it’s not okay–but I’m reminding you that you can say that out loud now and be part of normalizing a team approach with your doctor. And normalizing the conversation with friends that encourages her to dig a little deeper when she tells you her doctor didn’t listen. When she calls you in tears because she’s in pain, but the doctors won’t believe her because the tests came back “fine”, tell her to find another doctor and don’t stop until she gets answers. Remind her that she has the right to feel good and to pursue that feeling. Maybe tell her she has the power to be “difficult”—and should be difficult at the doctor’s office–until it’s spelled e-m-p-o-w-e-r-e-d in her chart.

If advocacy is your jam, you’ll love our next issue of Living Crue. Our annual issue devoted to a woman’s advocacy is ripe with stories of taking on the solution. Here’s our 2022 issue on the topic. I hope that you’ll share your story of Advocacy with us as well.



Best,

Bridget