Living Like You | Dear Doctor, let’s talk MS and COVID-19

Medical professional in lab coat holding stethoscope and face mask

One morning, 15 years ago, I walked into Accident and Emergency after months of excruciating trigeminal neuralgia, sharp, severe facial pain, battering the area in and around my left eye, as well as in my left temple and ear¹. Over the course of six hours, I went through X-rays, a CAT/CT scan, X-rays again and a carotid artery ultrasound. I was finally admitted to hospital, as an MRI scan was booked for the following day because my consultant deemed my symptoms as puzzling. I asked my consultant to be brutally honest with me once the results were in, because the symptoms I had were that intense and mindboggling, I thought that perhaps I had been imagining or dreaming things, especially since an ex-boyfriend deemed my fatigue levels legendary.

Once the MRI scan results were in, my consultant kept his word. When he sat on my bed with the results, he apologized because he thought I was “just another Monday morning case”. Right after, he stumbled over the words “but you have a high probability of MS.”

OK. So, I have MS. While the news was devastating, to this day, I still admire his guts for being as direct when he knew the diagnosis would forever change my life. Since then, no matter how big or small the medical issue, I ask for the same brutal honesty because it doesn’t help anybody to be given only half of the truth.

In that vein, I am but a mere mortal, so instead of my physicians and therapists using medical jargon, I ask them to leave the doctor language at the door. My memory will fare much better with the Queen’s English; even the more basic MS terminology is difficult enough as it is.

Your local medical professionals and hospital staff are under enormous time restraints, but since you already have MS and all its cognitive hang-ups, ask any new medical team to speak less like a Greek and Latin dictionary and more like an English one, which they will be all too happy to do.

A decade and a half later, we’re living in a time where the medical world seems to change constantly. In-person appointments have made way for Skype or Zoom video appointments, or telephone and email.

There are a whole ream of new terms following the arrival of COVID-19. With the world still trying to ward off new waves of COVID-19, we are constantly being reminded of how fragile the medical world has become.

In the past, many of you may have been hospitalized for various reasons and have thanked nurses and doctors alike for their professionalism and often the personal way they treated you, especially right before, during or after your MS diagnosis. You probably realized they sacrifice spending time with their families to go to work and care for total strangers. To you, they are lifesavers.

However, due to COVID-19, conversations with doctors have become more complex because, just like us, the medical world must adapt to the challenges of the pandemic. The sad thing about COVID-19 is that, despite all the questions we have in relation to the virus and MS, there is much more that we don’t know yet. And while they are trying to grasp the latest findings and its effects on people with MS, healthcare teams must also strive to give you the best possible care by not tiptoeing around the truth. Long story short, the truth is a powerful tool.

The point is, we all need medical advice and specialist care, preferably from the best in their field. Right now, the best immunologists and virologists in the world are getting together with the best brains spread over numerous branches of medicine, including governments and the private sector to work out how to contain the virus.

Their recommendations haven’t changed: wear a mask in public, keep your distance and wash your hands regularly. And right now, we need to heed their expert advice based on scientific data and not conjecture, because in doing so, we are helping them to master our own life with a chronic, neurodegenerative illness².

In the end, I want to give a loud shout-out to healthcare workers from every level up and down the organizational flowchart. I have met the best of people since my time with MS, and I will be forever grateful.

Sadly, while the clapping of hands, singing songs and other tokens of gratitude have died down, they will continue to look after our loved ones, not because they have to, but because they want to.

That is just who they are.

References