More Thoughts on the Myth of the Perfect Patient
In my last post, I talked about the extreme efforts I took to be the healthiest, most perfect MS patient. I realized I had more to say on the subject. If the average person looked at my diet today, they'd still think I was pretty strict. I still cut out most inflammatory foods: gluten, dairy, excessive sugar, corn, oats, veggie oils, and highly processed foods. But some "bad" habits have definitely snuck back into my life.
I drink coffee every day, have Diet Coke a few times a week, indulge in (gluten-free and vegan) sugary desserts, eat out often, sacrifice sleep for fun, no longer read food labels with a magnifying glass, blast music through my headphones, and occasionally grab fast food after a night out.
And with these choices comes guilt. Constant, nagging guilt that I indulge so much despite having an inflammatory condition. You would think I'd have more self-restraint, given the implications, and yet I've entered a chapter in my life where that's just … not a priority.
People are often surprised by my lifestyle. Those who knew me throughout my MS journey saw me transform from a lifestyle that was average, to extremely strict and healthy, to average again, and now possibly even slightly unhealthy. They're shocked that I've "regressed" so much, and I get questioned about it constantly.
I'm always uncomfortable answering. What do I say? "Yes, I still have multiple sclerosis and it's a really scary disease, but I'm just kind of taking a break from being healthy"?
Or when people who newly meet me realize I have MS, they often question how it's possible when we seemingly live the same lives. They applaud me for having so much energy and "handling it so well." But they don't see me take three-hour naps just to get through my day. They don't see the migraines, numbness, and spasms that creep up on me. They don't see the constant doctor appointments, blood tests, and MRIs.
Why are they so shocked by my diagnosis? Why are people shocked that I stopped eating such a strict diet? Why do they make comments about it? Why do their comments make me feel even more guilty?
Why are they allowed to drink a can of soda, but not me?
Nothing is worse than when someone points out I'm doing something unhealthy and asks how it affects my MS. Even when they don't mention my MS directly, the implications of my chronic illness hang heavy in the air. Because the reality is they're projecting an image of a perfect patient onto me, and that simply does not exist.
Even when I was at my healthiest, I wasn't perfect. Eating that healthy gave me extreme anxiety, and any misstep sent me into a spiral. But truly, you cannot win with a chronic illness. When you try to eat super healthy, you put immense pressure and stress on yourself. When you decide not to prioritize it, the guilt and shame eat at you. Not to mention that your body changes throughout each transformation, making the transition even more obvious and difficult.
When people come to me for advice about managing MS through lifestyle changes, I feel like an imposter. Yes, for almost two years I was eating strictly healthy and following all the health trends. But now, I don't really think about them. I feel inauthentic talking to people about what they should do to be healthier because I don't currently follow those practices.
Sometimes, I wish I could recapture that energy, passion, discipline, and motivation I had to be so healthy. But I'm not perfect, and I am certainly not the perfect patient.
For now, I will enjoy my indulgences. I will remind myself that nothing in life is permanent and that life has many chapters. I will never be the perfect patient, because there is no perfect patient. It is not my fault I have MS, and there is no need to punish myself more for it.
I'm sure my healthy habits will come back to me one day. For now, I will enjoy myself in ways I never even thought possible a few years ago. And I'll try to let go of the guilt that comes from not living up to an impossible standard. Maybe the healthiest thing I can do is accept myself exactly as I am today, and try my best to live in the present.
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