I Have an Autoimmune Disease. Now What?

I see it daily in Facebook support groups for various autoimmune conditions—the panicked post of a newbie to the autoimmune community. They’re looking for tips and tricks that will make this journey not so scary, not so freaking expensive. The posts are often uncomfortably personal, full of anger and “why me’s”. And they’re focused on the wrong things.

First of all, each body is different. While this person has just joined a group that I believe is growing at an epidemic rate, their situation is utterly unique. What is a healing balm to one person is like a poison to another. For example, heat and hot weather relax my joints. The sun is a necessity for me in multiple ways. Yet, I know plenty of autoimmune people who flounder in warmer weather and love the cold. To me, cold equals pain.

Another example is diet. I have not found a single diet that meets my needs completely. Each one has foods I don’t tolerate, some with almost deadly consequences. It’s been a formidable road to navigate. I know people with my same issues who thrive on a plant-based diet, but the same things would put me into a flare and worse.

So what’s a newbie patient to do?

First, give yourself permission to mourn.

You may be relieved to finally have that elusive diagnosis or your suspicions confirmed. But it’s still a lot to take in. Your future looks different from what you had imagined way back when. Go ahead and feel all the feels. Acknowledge each one as you prepare for the next step.

Second, Learn to Meditate.

It’s a bit of a running joke in my house because it can sound like advice people give to make themselves feel better, not you. It’s like the secular version of “have you prayed about it?” So I will add, meditate in the way that works best for you. The autoimmune life is stressful. Conflict regarding how you “used to be” compared to life now can come at you from every direction. Learning to keep the stress in check will be your first goal. Fortunately, there is evidence that it works. I encourage you to look it up.

I have learned self-hypnosis, and it made an enormous difference in a major, physical issue. I added the Calm App to supplement my practice. Headspace is another great app. Yoga, baths, walks, and music are also aspects of my life that I consider meditative. Yoga and walking have the added benefit of exercise. (Who doesn’t love a BOGO?) Basically, discover what helps you with stress and focus.

Third, Become a Research Expert

If you’re one of those people who simply want to be told what to do, you’re going to have to change. Sorry, not sorry. Maybe shift your mindset to listening to your body so it can tell you what works best. Then your body is telling you what to do. Understand that you know you best. Autoimmune management works when you’re an active partner with your doctor and other healthcare experts.

Since what works for one can be disastrous for another, have a “let’s see” attitude about everything. I call it being the “anti-Yoda”. In the movie, the Empire Strikes Back, the supposedly wise, old character of Yoda tells his young student, Luke, “Try not. Do… or do not. There is no try.” The advice may fly for a scared teenager, but I think it stinks. It leads to added guilt trips and feelings of defeat.

Try new protocols, foods, products, etc. If they work, rejoice. If they don’t, move on. It’s not a failure. Whatever you tried just wasn’t a good fit. Which leads to a huge pet peeve of mine:

Fourth, Choose Your Support Team Carefully

It’s tiring to see people put up confidential information, even test results (there’s a reason we have HIPPA laws) on public platforms seeking medical advice from regular people like me. Nine times out of ten, the answer they’re looking for is an easy search bar answer away. I know doctors like to tell us to stay off of Google, but I believe this kind of information seeking is way worse.

That said, I’ve received horrible advice from doctors that set me back months because I figured this doc knew better than me (not to mention, everyone loved her!). I’ve also learned brilliant, life-changing tips on Facebook. However, most of the time, this isn’t the case. The groups I still belong to mean well, but I take everything with a “let’s seek more info on this” approach.

If you need answers yesterday, there are some places I recommend starting. Dr. Mark Hyman is one. He has a website, a blog, a podcast, books, and more. In the same vein are Dr. Amy Myers, Dr. Izabella Wentz, Dr. Tieraona Low Dog. All have active practices, websites, social media, books, etc. Yes, there are many others in the community, but this is where I suggest beginning.

Lastly, the “But You Don’t Look Sick” group is, to me, the OG on support for navigating an autoimmune life. Definitely look up support groups for whatever your diagnosis is on your favorite social media platform. Just keep the grain of salt mindset about it. Please.

You may notice none of my references have links. It may be the proper SEO thing to do, but I believe it’s better for you to search these things out on your own. I know search engines can lead people down ugly rabbit holes, but I also think the information sticks better when it’s fought for.

Fifth, Prepare to Change a Lot of Things

Take a deep, cleansing breath. This is the part you’re probably dreading. The way you’ve been living has gotten you to this point. If you want it to change, you’re going to have to take a new tack. Personally, I can’t think of one area of my life that hasn’t needed changing due to my diagnoses. I recently had to throw away many beloved, childhood books, as well as the prom dresses I designed and made, thanks to a mold allergy. I’m a writer who can’t keep books in her house!!! Guess who’s unabashedly grateful for the eBook industry? Yep. This girl. As for the dresses, the pictures and memories will have to suffice.

I’m always open to trying something new to help my health. When something works beautifully, though, I lock in on it and stay loyal. As long as it keeps working. For example, I only use Seventh Generation cleaning products and detergents. My skin and lungs approve and have for two decades. No amount of Tide coupons will lure me away. In fact, I regularly throw away free samples of the stuff. It’s not worth the risk of a full-body rash. If I were to get a symptom like a rash, it will also be easier to assess where it came from and make appropriate changes.

“But will I have to change my diet?” Probably. I personally don’t know anyone who’s improved their symptoms without changing what they eat. I also know plenty of patients who refuse to do so. You can guess how life is going for them.

I’ve had digestive issues my entire life, so I don’t have emotional attachments to foods the way most people seem to. Therefore, I find it annoying when folks whine about giving up something like bread. There is so much more joy to found in feeling well than I ever have found in a piece of bread—even a freshly baked sourdough slice with melting butter on it. At the same time, I know the initial days of a new eating plan can be hell. Some foods are so addicting we actually go through a withdrawal period. It does pass. It might be another topic for you to research if it becomes an issue.

Those of us in the autoimmune community also know the calories in vs. calories out approach to weight loss is bunk. Thanks to my thyroid disease, I could fast for a week and gain weight since my metabolism slows down when chronically stressed. It’s another reason why we’re constantly researching and testing.

Some examples of what I’ve had to change to heal include:

• Food: I won’t go into my diet issues because they might be different from yours. I will bet you came home from the doctor’s appointment with a stack of paper on what to eat and what to avoid.

• Cleaning supplies

• Hair products: A curly girl who’s allergic to wheat is a particular kind of fun and don’t get me started on perfume. It applies to the next few items as well.

• Skincare products

• Makeup

• Hobbies: I’ve recently decided it’s better for me to spend less time gardening, thanks to that mold allergy. It’s been hard to accept, but I’d rather fill the time with something that makes me feel better.

• Favorite alcohol: I finally acquiesced to my doctor’s wishes on grain alcohols. I’ve only recently added an occasional drink back into my routine, but I’m sticking with something that has gluten-free origins.

• Vacations: We spend so much money on health, we rarely go away for more than a long weekend. Our last, real family vacation happened years ago, when some friends took pity on us and invited us with them.

• The décor in my house: Minimal books, carpet, collectibles, etc.

• Relationships: I’ve lost several, but I’ve also gained many. There’s nothing like an autoimmune diagnosis to make certain people flee like cockroaches in a kitchen. Trust me, you’re better off without them, even if they’re family.

All that said, I understand how this new world is overwhelming. Start slowly. Add supplements one at a time, in case something isn’t right for your body. You’ll discover it much faster this way. Pick one new thing to change a month to make it doable. Keep in mind diet and medicinal changes can take three months for your body to improve, especially if you’re trying to heal inflammation. However, unless you’ve been directed to wait six months on a particular change, if you don’t see improvement after three months, I’d move on. This life is too expensive to waste money on something that doesn’t work for you.

I love the fact that many restaurants in my town are quickly becoming accomodating to food allergies. This is often due to chefs and/or owners who are among those receiving these diagnoses. And the other local chefs—even famous ones—who refuse to amend their recipes? They’re on the wrong side of this epidemic, and they can lump it.

Like all things in life, take this journey one step, one day at a time. And know you’re not alone. I’m sure someone out there has an experience similar to yours. It may feel like your life is over, but I promise it’s not. More people are being diagnosed with an autoimmune disease every day. These people come from all walks of life, which makes the awareness spread further, too.

Yours in healing,

KKJ

Kallyn Jones is a contemporary romance writer as well as a life-long autoimmune patient. In addition to living with Hashimotos Thyroiditis and Celiac Disease, she’s a mother of a Celiac son. To learn more about Kallyn’s books (her first one features and woman with an autoimmune disease), click here.