Just over two years ago on a Tuesday morning, I sat in a sterile clinic room while a neurologist named Dr Harri pulled up some grainy, black-and-white images of my brain on his computer screen. My brain, that pink, fleshy thing encased within the safe confines of my skull, here staring back at me thanks to the magic of Magnetic Resonance Imaging. Dr Harri pointed at some fuzzy white spots and circles on my brain: lesions, he called them. Areas of scarring that had formed because my immune system had mistakenly, but repeatedly, attacked my myelin, the protective sheath that covers your nerve fibres. Gently, Dr Harri explained that the presence of these white spots, and their dissemination in time and space (words that made my mind boggle at the time), meant that I probably had multiple sclerosis.
Next to me sat my partner, who stroked my back and held my hand and said nothing. Next to Dr Harri sat a medical student, also saying nothing but aiming a broadly sympathetic look in my direction. Presumably, they were brought in because there was something to be learned about how best to drop the news of a life-altering health diagnosis to a patient. I hope they did learn something that day that they’ve since taken into their own interactions with patients, because Dr Harri’s approach was kind, calm, and clear. He took time to acknowledge the gravity of the news he was giving, he repeated what I didn’t understand, and he even phoned me a few days later to give me space to ask anything that my reeling brain had forgotten in the room. Having since heard stories of the callous, unfeeling, or downright dismissive ways that other people have received their diagnoses, I feel grateful that I had Dr Harri. I never saw him again after that, but if he happens to be reading this – shout-out to you, Dr Harri. Thanks for being nice and good.
Life since diagnosis
Somehow, the last two years feel simultaneously like they’ve disappeared in the blink of an eye, and dragged along at a sludgy, glacial pace. Last year, I wrote about the imposter syndrome that my diagnosis brought with it, and that feeling hasn’t completely gone away – but it has eased. My life has certainly changed though, in ways that I struggle to articulate. For some, a diagnosis like this can be the kick up the arse they needed to get their life in order, change habits, become a motivational speaker, or an influencer, or climb Mount Everest…or whatever else. I can’t say any of those things really apply to me. For posterity’s sake, and perhaps for the sake of encouraging any newly diagnosed people reading this to be kind to themselves, here are some things I have not done since receiving my diagnosis:
Arguably, these are some of the things social media/some doctors/family members/random internet forums/society in general say that you should do when you become ill. Recently I’ve been reading the brilliant book The Invisible Kingdom: Reimagining Chronic Illness, written by Meghan O’Rourke (I’d highly recommend it to anyone living with MS or any other chronic condition). In it, she describes how ‘autoimmunity is internalised by patients as the ultimate self-management project’. Of course, patients must learn to self-manage in ways that suit them, because the western healthcare system does not take a holistic approach. It’s basically just: here’s your diagnosis, here’s your medicine, off you go, see you in a year. That’s it. So, also for posterity’s sake, here are some things I have done since my diagnosis:
Now, I’m aware that that looks like a bit of a sad list. I’m sure my friends and family will read it and think, oh dear, is she alright? But I’m not sharing this list looking for sympathy, or attention, or to tell a sob story. I’m sharing it to be honest, and to let newly diagnosed people know that however this bombshell of a diagnosis affects them, it’s ok. You can cry and scream and be angry and depressed and not run a marathon or go vegan. Honestly. It’s all ok.
As mentioned in the list, recently one of my oldest and closest friends was diagnosed with MS after a sudden onset of optic neuritis. Just as my partner did with me, I sat next to her in a sterile clinic room and held her hand while a kind doctor broke the news. When she initially confided in me and another friend what was happening with her vision, alarm bells went off in my head. I thought almost immediately that it must be MS, but still I went frantically to Google, looking for other causes of optic neuritis. But something in my gut just knew, and I was scared – scared for my friend, and, selfishly, scared for myself. The realisation dawned on me that, even after two years, the news of my own diagnosis hadn’t fully sunk in. I hadn’t properly accepted it, and I didn’t necessarily feel that I was in a ‘good place’ mentally and emotionally. So how could I support my lovely friend through the same shitty experience? Because it is shitty. I didn’t want to hide that from her, but wanted to acknowledge that this journey is a highly personal one that people on the outside can’t fully understand - even me, with the same diagnosis. Her trajectory of acceptance would be different to mine.
Turns out, I didn’t really need to worry. Supporting my friend felt perfectly natural because there was no other choice. For her, it was a big deal for me to meet her at 7am to take her to an early hospital appointment. For me, it was just what I had to do. In a strange way, this experience has brought us closer together; we jokingly call ourselves ‘sclerosis sisters’ (don’t judge). Something I’ve grown aware of is that the advice I’ve been dishing out to my friend – be kind to yourself, take it slow, be patient in figuring this out – is advice I have rarely adopted for myself. But I’m trying to now. Better late than never.
I’ve listed here all the things I haven’t done, but two years on I feel ready to make some changes. I want to start working out and feel strong; feel some semblance of control over a body in rebellion. But my symptoms are under control, and I haven’t had a relapse in two years – thanks, Ocrevus. You won’t catch me cutting out the foods I love, because it seems an insult to suggest that someone living with a chronic illness should also deprive themselves of cheese and chocolate…but I do want to eat more vegetables. I’m even ready to adopt just a bit more of that ‘seize the day mentality’. These past two years, I’ve craved safety, comfort, and predictability, but I’m just about at the point where I can say, ‘ok, this is here to stay. So what next?’. I don’t know that (nobody does), but I’ve got a life to live. So, I’ll try that.
Writer and theatre-y person based in London.
Symptoms since January 2017, diagnosed with RRMS in April 2021, on Ocrevus since November 2021.