On Advocacy - In Honor of MS Awareness Month

I incurred a minor relapse. The statement is as blunt and disruptive as the experience. MS relapses have no finesse or tact. There is not a smooth segue from daily neurological functioning to the staccato choppiness of an exacerbated brain. It is halting. But it requires action and response nonetheless. And when it comes to MS, there is no time to waste. The sooner you act, the better.

Here’s the thing: our health care system is not set up to move expediently. Numerous channels of communication require proper approval before moving forward in a course of treatment. The patient needs to set up an appointment, often pleading to get crammed into a spare second or waiting days (if not weeks) for the next opening. After administering in-office tests, the doctor likely orders additional labs or imaging (usually requiring a go-ahead from insurance companies before appointment booking can commence). Once the results are medically interpreted, the patient can finally proceed with a treatment plan - which also regularly hinges on insurance approval and appointment availability. This is all to say, an inexperienced patient may wait months to receive relief for an unexpected flare up.

A decade ago, that naive patient was me. I had received my MS diagnosis six months prior and was still wrapping my head around this new facet of my identity. I also was a 24-year old woman with the usual host of worries and insecurities for a fresh-faced millennial staring down the impossible unknown of her future. I knew very little. And I had very little interest in rocking the boat. My social conditioning muted me. I settled for a delayed appointment booking and kept quiet as my symptoms worsened. I assumed that I just needed to accept the sluggish system with its inherent flaws. I didn’t know there was more that could - and should - be done.

Lucky for me, one of the baristas at my regular coffee shop did know. Having been diagnosed with MS some time before, she witnessed my ordeal from the sidelines with a knowing gaze. One day, she graciously broke the ice to ask me how I was doing. Despite my default guard of prickly edges, I softened to her and shared my distress at the glacial pace of medical care. She then proceeded to perform a seemingly miraculous act. She took her break, called her neurologist’s cell phone, and set up an appointment for me the next morning. Then she returned to the coffee counter, prepared my cappuccino, and graced me with the unprecedented gift of advocacy and accelerated care.

This kind neighbor taught me how to stand up for my needs as a patient. Then she handed me a golden ticket to the most inspirational medical practitioner I could have asked for. Based solely on the reference of a current patient, my new neurologist squeezed me into her lunch break and rammed my treatment through the processing sludge of medical red tape. In the coming months, as my case declined, she would call on any and every resource in her network to improve my care. When hospitalized for a particularly debilitating relapse, she texted me to check in… and then stopped by late in the evening on her way home from a full day of serving other patients. When the insurance company continued to deny her recommended strategy for disease modifying therapy, she made calls to fellow well-renowned neurologists in order to strengthen my case. She fought for me relentlessly. And she continues to fight for my ability to live a full life today.

That’s why this time around, after giving myself a long hard staredown in the mirror and acknowledging that something wasn’t right, I knew it would be okay to circumvent the medical rigamarole and reach out directly. I needed to get into the office and on the track to care. ASAP. I sent a message in the medical health app, I called the office, and I sent direct texts to my neurologist and study nurses. The messaging included specific details on the frequency and severity of my symptoms, the timeline of when new and worsening symptoms appeared, as well as information eliminating other potential comorbidities like the presence of a virus, infection, or heightened stress. Within two hours, I had an appointment scheduled for the following day. I underwent the necessary tests and continued to push for expedited treatment, leaving the visit with orders for IV steroids and an MRI of my brain and spine. After a couple of self-instigated phone calls, I was booked at the infusion center to administer the treatment by the end of the day.

The Kingdom of the Ill is a vulnerable place. It should not be a realm where one has to fight for their life and their access to care. Unfortunately, it is. That’s why every scrap of self-advocacy is commendable, and every contributor to one’s system of support is worth their weight in gold. I am eternally grateful for every single person who has supported me on my journey, who has lifted me up in my efforts to live a full and enriched life, who has advocated for me or taught me how to advocate for myself… For all who have helped me build confidence in my own voice when raising awareness about life with multiple sclerosis. A minor relapse is scary. But, with the proper care, it is surmountable - because a strong voice is unstoppable.