Healing Imperfectly: How Giving up Perfection helped Me Heal from Autoimmune Disease

When I sat down to think about where I want to take this blog in 2018, I knew I wanted to expand beyond food and include more of my story and really dive into living life with a chronic illness. So, I’m kicking off the new year with a new series that I’m calling ‘Healing Imperfectly!’

Over the past year or so, I’ve made a concerted effort to take a step back from my health and stop chasing perfection, and that may have been the absolute best thing I have ever done for myself. It helped me more than any diet, supplement, or alternative therapy, so I want to tell you about it too! We will discuss finding balance on a healing diet, how to stop obsessively googling every symptom you have, how to come to terms with being on medication while pursuing a holistic lifestyle, and more.

So first, my before and after. Boy, this was not a fun photo collage to put together! My “before” was taken about a year and a half ago, when I was at my sickest. My “after” was taken just a few nights ago, and while I admittedly have more makeup on, I think the change is pretty apparent. In the photo on the left, I was about two years into my Lupus diagnosis and I very suddenly lost about 35 pounds (I thought the first 10 was great, but then started to wonder what the heck was going on). My hair was falling out and I couldn’t hold my hair dryer or straighter because my arthritis was so bad, so I finally gave up and cut it really short to lessen the maintenance. I was exhausted and finally had to call it quits on my workout routine for a while. I was seeing a TON of doctors. There were weekly visits to the rheumatologist, dermatologist, regular care practitioner, urologist, physical therapist, gastroenterologist, nutritionist, and functional medicine doctors.

There was a LOT of medication, including a high dose of a steroid called prednisone, and another immunosuppressant that was so bad I had to sign a waiver stating that I was using reliable birth control and would not get pregnant while on it. On the flip side, I was eating an incredibly restrictive diet as my nutritionist at the time piled on one healing diet after another. What started as low FODMAP and Keto also became low oxalate and low histamine, leaving me mostly only tolerating meat, and squash. I was studying to be come a Nutritional Therapy Consultant  at the time to learn even more about nutrition, and my spare time was spent listening to health podcasts, diving into research on SIBO, Mast Cell Activation Disorder, different diets, and every method of healing I could get my hands on (don’t worry, I’ll cover all these diets and conditions in future posts!). Illness was my life.

Meanwhile, I kept reading blogs and listening to podcasts where people with illnesses similar to mine were saying that they went AIP or Keto and were totally healed! I went to my doctors and they’d say “you are doing everything so right, I wish all my patients were like you!” But it wasn’t working. So, I’d sit there and wonder what was wrong with me. What was I doing that these people weren’t? Was it that glass of wine? Is it because I decided to “cheat” with a gluten free pizza? Did I need to suck it up and spend a few more thousand dollars on extensive testing (I wish I was exaggerating about this amount)? I truly wasn’t enjoying life anymore because I was chasing healing and trying to “fix” my body, and all it was doing was turning against me. Even though I was a certified health coach and nutritionist, I didn’t feel I could help anyone since I couldn’t even help myself. What kind of example was I setting?

Then, one day, a switch flipped. I distinctly remember calling my mom on a drive to the grocery store and I was mad. I told her I was done with the diets and research and supplements and I was going to go to the store and get whatever looked good to me. I was just going to EAT. My mom was probably just as over my restrictive dieting as I was, and in total support of the new plan. So, that night, I made a full, nutrient-dense meal, and it was so, so good.

I reincorporated more food into my diet including healthy carbs, grains (gasp!), more vegetables, and even sugar in an attempt to stop losing weight. I ditched the podcasts and research (temporarily), I stopped spending endless hours trying to figure out how to heal, and I stopped making weekly trips to the doctor. I found an amazing allergist who pretty much changed my life with a new medication (yep, that’s right, real deal medication), and I found a nutritionist who helped me focus on finding out which foods I really do and don’t tolerate, and switched my focus from killing the bad bacteria in my gut to healing it. I enjoyed eating out occasionally without guilt.

Do you want to know what happened? My hair stopped falling out. My joints started feeling better. My energy increased, and by December of 2017 I hit remission from lupus, came off a lot of medication, and started gaining weight back and getting healthy again. During this time I also came to terms with the fact that I just may never be 100% again, but being 90% is pretty darn great. These days, when I feel down about my body, or question why I can’t do what everyone else can, or why I have to spend so much time trying to make myself healthy, I’m able to remind myself how far I’ve come, and exactly how much my body has done for me. A few weeks ago, I was working out with my husband and he wouldn’t stop staring at me. I finally asked him what was going on and he told me he was just so happy to see me working out, because he remembered when I couldn’t walk across our apartment without being in pain, and it was amazing to see me come this far.

Since I want to keep this column real with you, I have to tell you that my remission didn’t last forever. Due to a highly stressful year, both emotionally and physically, I’m currently back out of remission. I’m no longer ashamed to say that out loud though, because I know I’m not perfect, and I know I couldn’t control my circumstances this year. All I can keep doing is trying my best, and doing what I know is right for my body. I also know that I still feel so much better now than I did in that “before” picture. I’m 100% confident that I’ll achieve remission again, and I know obsessing about it won’t help me get there.

If you, like me, feel like you are “doing everything right” but still aren’t seeing results, it may be time to take a step back from your health and spend some time just living. It may help more than you could possibly think!

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