MS Patient, Ph.D.: Patience, the Rusty Adjective
I had a hard time dealing with the bureaucracy in healthcare first, before I could start treatment against MS
Because I have a unique name, when I introduce myself, people are sometimes reminded of Boccaccio's patient Griselda. It is ironic that my name would evoke images of a wife noted for her patience and obedience, since I don’t identify with such a passive woman, like the one in this story with a husband who shows complete lack of respect for her, cruelly testing her loyalty. My own husband, of course, is very respectful and trusting. But, in the 2 months after my first relapse I did take on this persona, if in title alone: I had to learn to become a patient patient (if you'll forgive the pun), at least where my healthcare was concerned.
I generally prefer to play an active role in my healthcare (and life), which involves making plans and promptly enacting them. Supporting me in the need for fast action was information highlighting the importance of starting on a disease-modifying therapy (DMT) for MS as soon as possible. The plan, or so I thought, was to talk to my neurologist about the DMT of choice, have him write a prescription, and start the DMT immediately thereafter.
In reality, it was a long 3 weeks after my hospital stay before my first office visit with my neurologist, where we would decide on the DMT that I would use. I had no choice but to wait until then to take action to affect my disease. However, getting the DMT was not as simple as ordering an antibiotic at the pharmacy.
A week later, I still didn’t have the medication, since it turned out that the pharmacy never received the prescription from my doctor. A call to his office to clear this bureaucratic mix-up brought me to tears, since I had to carefully explain that I was enquiring about a DMT for my recently diagnosed MS. (The wounds were still too fresh to disclose this without welling up.) The next few weeks involved a series of calls made in mailrooms and hallways near the lab where I worked, trying not to draw attention to myself as I discussed my health and finances with strangers. Trying not to get upset. Feeling the tingling in my fingers and legs, reminding me why I was going through this. Having my experiments interrupted just to verify information; trying not to lose focus. Always being patient.
In the end, no harm was done, right? Getting the DMT only took 7 weeks after my diagnosis.
But it felt like an eternity.
That amount of emotional burden for the span of weeks was mainly unnecessary, and I hope that clinicians and companies understand the toll that weeks of delay and turmoil can have on a patient. Instead of using that initial energy to get motivated about the DMT and getting used to its side effects, I had to use it to fight with various offices just to get the treatment in my hands. Partnering with your patients to help guide them through the process is key, because it will always be their first time going through this. Yes, we should be patient patients and learn to work with the system. But why make us go through this unguided, when your experience as clinicians, nurses, and other office staff can make it less stressful?