I often hear from mothers, cousins, friends, or co-workers that “X was just diagnosed with an autoimmune disease… he/she has no idea what to do.” I rarely speak to these new patients personally, but my heart goes out to each one. If I had a chance to talk to them, this is what I’d share.
(With these feels)
You’re not alone. Autoimmune disease rates have skyrocketed over the past few decades. Partly because we’ve learned that all sorts of various conditions are autoimmune in nature, but more notably because there’s something really effed going on between our genes, the environment, and our food. In the midst of the “wtfs” and the “why mes” and the “say what nows?!" know that you’re surrounded by fellow patients, hard-working doctors, and researchers racing to find the best way to mediate these conditions.
There is no magic pill. Doctors and pharma companies might tell you not to worry, autoimmune disease is incurable but look! Shiny new drugs to keep you running! You carry on with business as usual and we’ll take care of the health part.
That’s great, until it isn’t. Because what sometimes happens with autoimmune disease is that drugs work worders for a time before the immune system catches up and overrides their action. Then you’re suddenly racing your immune system to find a new drug, or new tier of medication with a long list of questionable side effects.
But also…
Drugs are not a failure. I speak to a lot of people who want to get off their medications. While I support this goal, I also support approaching it in a realistic way. Work with your doctor. Work (hard) on your diet and lifestyle. Pay attention to your body. And most importantly, if things happen and symptoms arise, don’t reject the drugs. Flares are sometimes triggered by elements outside your immediate or reasonable control. You might be able to catch things early and calm them down with diet and lifestyle, or you might not. Use the medications when you need to to avoid worse inflammatory damage. If this happens frequently, get proactive about finding a medication that stops things, even if it’s temporary. When it comes to an immune system spinning out of control, medication is definitely the lesser of the two evils. Consider it a power tool in your toolkit.
Find a doctor that you like and trust. This is huge. If you can’t find a doctor in your immediate network that you feel good about, keep looking. A good doctor might not always tell you what you want to hear, but you should always feel heard. The best doctor/patient relationships feel like teamwork.
There is more than one way to skin a cat. You will hear from friends and family, acquaintences you barely know, and strangers in the hospital, about what “cured” them or their friend. Maybe it was fasting. Maybe it was regular sauna use. Maybe it was a vegan diet. Maybe it was a paleo diet. Maybe it was meditation. Take the message of hope, but hold the details loosely. Your healing path will be unique and multifaceted. And it rarely travels a straight line.
Remember that YOU are in control of your health. Sort of. Autoimmune disease is funnny like that- it’s organized chaos. While flares might seem random and unorganized (and exceptionally unfair) at first, the more you learn about dietary and lifestyle triggers, the more you can root out these causes in your own life. In a tiny, simplified nutshell, autoimmune disease flares happen when our immune system runs on high for too long; it serves to follow that to induce remission, you must reduce inflammation and calm your immune system. Diet, lifestyle, and environment changes are powerful things over time.
Be your own advocate. In this health realm, more than any other, you must take the reins if you want a better outcome. This means research. It means clicking on the footnote links and reading the details of those studies. You don’t need to take it up as a full time job, but you do need to educate yourself as much as possible. There are bajillions of resources on autoimmune disease, some good and others terrible. Find the ones that fit with what you’ve learned from your research. Follow them, read their writings, and check their footnotes. The autoimmune disease landscape is changing all the time as new medical discoveries are made, diseases linked, and symptoms triggered or calmed. Follow along and -most importantly- keep an open mind.
Know this: your body wants to heal. It won’t feel like it sometimes. You’ll think your body is sabotaging your life, refusing to cooperate, demanding the impossible. But it’s not. It’s actually trying to fix things, in a very misdirected way. So instead of feeling like you’re at war, give your body a little love. Change the messages you’re sending to it and the environment around it. It’ll respond, eventually. It wants to. It needs to.
Celebrate the silver lining. Autoimmune disease just might turn you into the healthiest version of yourself possible, if you let it. Between the constant tiptoeing around your immune system and the delicate diet-stress-lifestyle balancing act, you learn to get in touch with your body’s needs in a way that few of us ever have to. While most people trundle along, feeling moderately unwell from a slowly depleting diet and a chaotic lifestyle, your body won’t stand for that. It demands nothing but the best… or else. It takes hard work and patience to figure out what your “best” is, but when you get there, chances are you’ll feel better than before.
You got this journey.