4 days ago
The Myth of the Perfect Patient
Nearly three years after my multiple sclerosis diagnosis, I've gone through more lifestyle changes than most people experience in a decade. I've been the health fanatic, the carefree spirit, and everything in between. Leading up to my diagnosis, I had already cut out gluten and dairy and was working with a nutritionist. But once I was hospitalized for my MS, I took things to an extreme. I fueled all my despair and anxiety into an obsessive focus on my health.
I dove headfirst into the highest level of the Wahl's protocol with some additions: no carbs, no legumes, no nightshade vegetables, no cruciferous vegetables, no garlic, no onion, no sugar, no alcohol, low glycemic index fruits only, no vegetable oils, no coffee, no added sugars, no eggs, and only grass-fed and antibiotic-free proteins. My daily nutrition consisted of 9 cups of vegetables with high-quality protein and healthy fats at each meal. My only "treats" were berries, herbal tea, and kombucha. I lived like this for over a year while doing 18-hour fasts daily.
The lifestyle changes were just as stark. I was in bed by 8 p.m. every day. I stopped going out, avoided restaurants, and stayed away from crowds out of fear of my new immunosuppressed status. I did acupuncture weekly, breath work, meditation, yoga, and consistently met with a nutritionist, health coach, and therapist.
I was also on an elaborate vitamin regimen, taking multiple supplements with each meal: omega-3, selenium, zinc, vitamin D, turmeric, ashwagandha, vitamin B, probiotics, sea moss, iron, magnesium, and many more. Living like this was a full-time job. The only way I could really pull it off was short-term disability and working remotely.
I worked with multiple functional medicine providers and spent an obscene amount of money on this lifestyle. Looking back, I don't even want to calculate how much it all cost. I genuinely thought that would be my life forever. It felt like my old life had ended with this diagnosis, and I'd spend my remaining days isolated from society, eating mostly vegetables, and spending all my money on organic foods. But about a year and a half later, after all my repeat MRIs came back clear, I started to loosen up. I began to travel again, which forced me to accept that I was going to eat foods that didn't adhere to my strict guidelines. I moved to a new city and realized creating a social life wouldn't be possible if I refused to go out.
I started to feel safe in my disease's stability. Slowly, I began to live more like an average 25-year-old would. I went out on weekends, took trips, stayed up too late to hang out with friends, ordered food without checking if the meat was grass-fed, and most importantly, started enjoying the simple things again. People noticed the change. When I once needed 20 minutes to approve a menu before we went to a restaurant, I was now easy-going and spontaneous. I was having fun and so grateful to have a sense of normalcy back.
Comparing my diet and lifestyle now to when I was first diagnosed, it would be safe to say I've completely "gone off the rails." But looking back, I was too hard on myself. I was scared and tried to control every aspect of my diet and lifestyle to prevent more flares. Once I was able to trust the medicines, adjust to immunosuppression, and feel better, I realized how lucky I was for this second chance at life.
The pendulum had swung from one extreme to another. From hyper-vigilance to something resembling freedom. And neither extreme felt quite right for long. What I've learned is that there's no perfect way to manage MS. I have to find an approach that balances health with actually living a life worth the effort of staying healthy. Some days, that has to mean green smoothies and resting. On other days, it can mean staying out late with friends to drink all the sugary drinks we can find.
In truth, I'm still figuring out where the middle ground is. But I know one thing for certain: The perfect patient doesn't exist. And pretending otherwise just adds unnecessary suffering to an already challenging journey. Having MS does come with its responsibilities, but expecting myself to be the perfect patient all the time has led to burnout. Instead of focusing on being the perfect patient, I've decided to focus on getting my spark and spirit back after a hard diagnosis and journey to stability. And lately, it truly does feel like I've found a part of myself again that I had lost in my journey.
