10 Mistakes I’ve Made While Recovering From Autoimmune Disease

Anna Disease Management & Treatment, Emotional Healing, Living Well with Autoimmune Disease 4 Comments

Here’s what we all want our recovery from autoimmune disease to look like:

And here’s what autoimmune disease recovery actually looks like:

It doesn’t matter who you are, what kind of doctor you work with, or how much money you have – there is no such thing as a linear healing process.  We all want it, but it doesn’t exist.  And that is okay.  Because the majority of healing is a result of everything we learn from our roller coaster recovery.  The more time we take to listen to our bodies’ unique needs, the easier it becomes to find answers.

It’s part of the process.  So let’s embrace it with a nice warm hug.

girl holding teddy bear

Within our embrace, let us also share our lessons learned so that we can maybe, together, reduce that roller coaster ride to just a couple small loops rather than a 300 foot drop at 100mph.

Sound good?

Below are 10 of the major lessons (in chronological order) I’ve learned while on my autoimmune healing journey.  My hope is that by sharing my mistakes, I can help you dodge obstacles, save you from frustration, and maybe even shave some time off your timeline of recovery.

*Please remember that I am not a doctor and this isn’t medical advice.

10 Mistakes I’ve Made While Healing from Autoimmune Disease

1. Depending on my doctor to fix me.

This is probably the most common mistake I see among autoimmune newbies and it hit me on the first day of my diagnosis.  I was thrilled to finally have an answer to my long list of Hashimoto’s symptoms AND a simple, quick-fix – thyroid hormone replacement medication.

It was sooooo amazing!… until it didn’t work and only made things worse. 

Unfortunately, this was when I learned that the very specific type of medication my primary doctor prescribed me was literally the only thing in her bag of tricks.

My experience with the “specialist” she sent me to (endocrinologist) was even worse.  And the holistic doctors I worked with after, weren’t much better.

Lesson Learned: 

No one but me can give back my health.  Good doctors are key-players in recovery, but they don’t have a magic remedy for a disease that requires lifestyle and diet changes to improve it.  This is especially clear when the majority of doctors don’t even acknowledge that nutrition, stress, and “lifestyle” play a major role.  That part falls on me.

The ball is, and always will be, in MY court.  So I must be an educated self-advocate to guide my doctor appointments, ask the right questions, and make the best decisions for my recovery. 

(Because we (Frank and I) are so passionate about this subject and helping others take ownership of their health, we’ve written a few more posts on the subject and plan on writing many more in the future.  See below.)

6 Things You Can Do When You Can’t Find a Good Doctor to Treat Your Autoimmune Disease

How to Become Your Own Medical Advocate for Your Autoimmune Disease

How to Find a Good Functional Medicine Practitioner

2. Pushing myself too hard, thinking I could just exercise this away.

Naturally, when everyone and everything around me says that exercise is what we need to stay heathy, I jumped right into training for a half marathon.  I didn’t, however, consider for a second that it could make my autoimmune disease worse.

But, my body at that time was giving me all the warning signs that it was burned out.  I ignored my hair falling out in clumps, my dry and itchy skin, my complete lack of energy, and brain fog – all signs that perhaps, I had no energy left in the tank to run countless miles each day.  As a result of my ignorance, my thyroid antibodies skyrocketed to the highest they’ve ever been.

Exercise with an autoimmune disease is still very important – no doubt.  Mark Sisson writes a great post about it here.  But this does take some time to figure out the right balance, and I should have adopted a gentler approach to exercise like yoga or simply walking.

3. Jumping to supplements and quick fixes, rather than focusing on building myself up with basic foundational building blocks.

This is another very common mistake.  Instead of focusing on optimizing my diet and sleep schedule, reducing my exposure to toxins, and managing stress, I decided to reach for the easiest, most affordable “quick fix” within my reach. 

At one point, this was caffeine pills.  Then, a multi-vitamin (which made me very ill).  And pretty much any beverage that had ginseng in it because I thought it helped me.

To be fair… I was not educated at this point and my doctors weren’t helping, so I was just grasping for straws because I didn’t know that my diet and lifestyle choices were playing a role. 

But, full disclosure… even when I was provided with the information I needed to heal, like the suggestion to go gluten-free, I didn’t want to change.  It was too inconvenient.  So, I continued on searching for more quick fixes and ignored the advice.

In the end, it was a big mistake.  I wasted a bunch of money and only postponed my healing by ignoring the most basic building blocks my body needed to heal: sleep, reduced stress, diet, clean water, and a nontoxic environment. 

4. Continuing on with supplements and care that produced no results.

The multi-vitamin I mentioned in number 3 above is a great example of this mistake.  I think I took it for a good 3 months and felt awful every day I took it.  But I continued anyways.

Then, one of my doctors recommended a B-vitamin complex and the same thing happened.  I seriously felt like I was going to keel over within an hour of taking it, but I still carried on.

Yes, some treatments and supplements can make you feel worse before you feel better due to detoxing or die-off of bacteria, yeast, etc… but this was totally not the case.  I once again ignored all the symptoms my body was telling me and stayed the course because it was “doctor’s orders”.

I could list off a thousand other times this happened: continuing a supplement or medication that gave me no results or made me feel worse… or, continuing with care from a doctor who was leading me nowhere.  Both are mistakes I’ve made repeatedly, which waste time, money, and postpone healing.

Thankfully, I finally have the wherewithal to recognize this before it happens again, but it took time for me to learn.

5. Not taking the time to understand the purpose behind the changes I was making (and therefore, cheated).

Maybe you can already guess where I’m going with this… one of my first functional medicine doctors didn’t help me much, but she did make the recommendation to change to a gluten-free diet right away. 

She didn’t tell me why, and I didn’t ask.  So instead of going truly gluten-FREE (free of all gluten), I loosely agreed with the notion, and convinced myself to “only” have gluten when it was “necessary” (convenient) for me.

I did this for about a year.  I was gluten-free about 90% of the time and felt no difference in my symptoms.  Meaning – I still felt like crap.

This all changed once I learned the real reason why avoiding gluten is so important for autoimmune disease (here’s an article that summarizes it), AND the reason why just a tiny bit every “once in a while” can derail healing by up to 6 months (and possibly even longer!), as explained in this article here.

Once I caught on to the detriment I was causing to my sad intestines, I took my diet seriously and experienced major gains in my recovery.  A strict Autoimmune Protocol diet was the answer I needed.

 6. Focusing on survival and deprivation, rather than nourishing and healing.

While I physically thrived on the Autoimmune Protocol diet, my mental health took a dive. I spent my time frustrated with the lack of food choices and overwhelming feeling that I was slowly drowning. 

The problem was that I didn’t appreciate the diet or its healing capabilities.  I really only did it out of desperation.  I viewed the diet as “extreme,” and spent my energy on surviving each day of the diet until my 30 days were up and I could begin reintroducing foods.

This mindset was detrimental to my health.  Yes, the diet is restrictive, but when done correctly, it nourishes and feeds the body with everything it needs to being healing! 

How awesome is that? 

This is one of the most effective tools I’ve found for autoimmune disease, and it does not degrade or suppress the body.  Instead, it builds it up from the inside out. 

If I had only focused on all the new and God-given foods that I COULD eat, rather than all the foods that I couldn’t eat, I would’ve had more success the first time on the diet.

By the time I learned of my undiagnosed autoimmune disease, I welcomed this diet with open arms and stuck with it for 6 months before reintroducing foods.  Most importantly, my mind AND body were better off for it, and saw amazing progress.

7. Depending on willpower rather than behavior and environmental change.

As soon as I started to attempt various lifestyle changes, I fell into the trap that this was all a willpower game.  I just had to grit my teeth and push through all of my temptations, and I’d make it through.

Ha.  Guess how long that lasted?

Eventually, I learned that willpower is like a muscle – the more it’s used, the more exhausted it becomes. 

This explains why I when I decided to reduce my time on social media, I could avoid scrolling through my Facebook feed in the mornings when I was alert and refreshed.  But by the end of a stressful day, when all of my mental energy was used up, I gave into the social feed and wasted hours of my time.

What I should have done was:

First, change my environment to remove as many temptations to jump on Facebook as possible.  This means deleting the Facebook app off my phone and logging out my browsers.  I could even use one of these apps to help me break my addiction.

Second, reduce my use of willpower in other areas – like diet.  If I am spending all day resisting the cookies in the pantry, for example, then I might give into Facebook because I am using my willpower for the cookies.

Once I realized just how much my environment impacted my behavior, I felt more control over the changes I was trying to make.

8. Not keeping a health journal.

So simple, and yet, I didn’t do it.  A health journal simplifies the ultra-confusing road of autoimmune recovery and records the daily observations of what is and isn’t working.  It is a powerful, but underused tool, and because of that, I’ve written multiple posts about it:

10 Benefits of Keeping a Health Journal

How to Start a DIY Health Journal for Your Autoimmune Disease

9 of the Best Health Journals (Paid & Free) for Autoimmune Disease

9. Comparing my healing to other’s healing.

This isn’t just limited to autoimmune disease.  This goes for life in general.  It’s the comparison game and it gets ugly fast.

Now exposed to the highlight reel of everyone’s life via social media, I fell into the trap of jealousy and envy, even among those with autoimmune disease. 

I always thought to myself – “All she had to do was cut out gluten and now she’s in remission, and here I am trying EVERYTHING, and still struggling.”

Yes – it’s true.  Some people, especially those who are right at the beginning of an autoimmune struggle might be able to catch themselves and reverse their symptoms with minimal changes.  Such is life.

But, I can vouch for is this: the more complicated the journey, the more opportunity there is for growth and deep healing.  This is something the majority of people will never encounter because their health isn’t at stake.  It is truly a blessing in disguise.

I eventually learned to embrace MY journey – no matter how slow or ugly it was.  I realized that hidden within it are stepping stones to a happier and healthier life.  I now consider it the biggest self-improvement project ever.  I am forced to take action because if I don’t, then I am living in the pits with my symptoms.

10. Striving for complete remission and medication-free.

There are so many things wrapped up into this mistake, I’m not sure where to begin.  So, I’ll touch on a few.

  • At first, I wasn’t convinced that my lifestyle could actually reverse my symptoms, so I set a goal to achieve “remission”, as the proof I needed to be convinced.
  • Once my diet and lifestyle worked to reduce my thyroid antibodies to almost zero, I became addicted to trying to achieve complete remission – which means no evidence of antibodies in my blood at all.
  • But, there was also another driving force: I wanted to prove to other people that diet and lifestyle WORK.  Frank and I have both received criticism for our “high-maintenance” lifestyle throughout the years.  I thought that if I had the test results to show them why I am doing this, then they would stop. 
Here’s the thing… 

It doesn’t matter what people think because they don’t have to live with my disease.  I do.  So if they want to judge me and the way I live, go for it, but they aren’t living in my shoes.

Plus, as far as we know, there is no “cure” for autoimmune disease.  I’ve learned to accept that complete remission, defined by no evidence of disease activity, might not be possible for me, and that’s okay. 

But, complete reversal of symptoms?  Meaning I don’t feel the effects of my autoimmune disease?  Totally possible.

As long as I feel well, I’m not going to get wrapped up in the details of my antibody numbers (but I do want to see them low and stable).  If I need a tiny bit of thyroid medication or Low Dose Naltrexone to keep things in check, then that’s okay.  My job is simply to support my body.

Instead of remission, I now strive for a well-managed autoimmune disease, and I really love this post: Why the Words “Remission” and “Cure” Do a Disservice to the Autoimmune Community written by Mickey Trescott, which dives into this philosophy more.  It’s a great read.

No Mistakes – Only Lessons

Yes, I know I’ve been calling all these things “mistakes,” but I have to admit that I appreciate each one of them because of what I’ve learned. 

I hope my lessons learned can lead to a shorter and less stressful journey for your healing.  Because, in case you weren’t able to pick up on the trend, almost every mistake I made either:

  • Wasted my money
  • Wasted my time
  • Prolonged my progress

And while I grew, and learned, and became better through my struggles… I think you can get to your better-self (because we are never done getting better) WITHOUT all of the frustration.

Have you learned any lessons during your quest for autoimmune healing?  Share below in the comments!

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Comments 4

  1. Anna, thank you so much for sharing, I have just met with a Functional doctor because of being so disappointed with my endocrinologist. I find myself in everyone of your examples. I just started a Gluten Free diet and after 1 week I lost it and ate a cheeseburger and banana cake tonight. I just felt so hungry and deprived. I really have to research more and be prepared. Seems like I am at a loss on what to eat. I have bought all kinds of books (paleo, books by Amy Meyers, Medical Medium and others.. It is so hard to plan a diet, some of the foods I never heard of. The reason I am writing is because you have made me look at things differently, I really needed to see that I am not alone and other people are struggling too. I also have chronic pain from a bad car accident, 3 level cervical fusion, so just receiving a diagnosis of Hashimoto’s just makes life so hard. Thank you again for the encouragement and support. Janie

    1. Post
      Author

      Hi Janie, I am so sorry to hear about your struggles… it always seems that an autoimmune diagnosis comes at the worst times. Unfortunately, the stress from traumatic/emotional events can often be the trigger for an autoimmune flare. You are definitely not alone.

      I understand your frustrations with diet changes. It is always so much easier said than done and I can’t tell you how many times I caved when I first tried it. I think that there is a lot working against us – temptations all around us that make it so difficult. But like you said, understanding WHY we need to avoid certain foods can really help, along with a solid plan that you make ahead of time with meal plans, grocery lists, etc. and a full pantry clean-out. It also helps to give yourself a little grace as you figure this all out. For example, let’s say you are rocking it at home with homemade meals, but while out and about, you get hungry and stop to get a cheeseburger. Well, next time, you know to leave the house prepared with some safe food so that if hunger strikes, you are prepared.

      It also helps to just start simple. Don’t forget that your basic whole foods: meats, veggies, fruit – are all naturally gluten-free!

      We are praying for you, Janie. Please feel free to e-mail us if you ever want to chat.

  2. First I was diagnosed with Graves the doctor didn’t mentioned that it was an autoimmune disease, got married had two beautiful girls, during pregnancy I went on remission from there went on/off until now. Yes, at age 50 it came back stronger and accompanied with other symptoms. Now this endocrinologist wants to do the surgery but never mentioned autoimmune disease, he only said if you want to get better there’s only 2 options RA or surgery. I’m doing my research and like you said we need to learn to manage this disease. Thank you so much for making this post. I’m taking my medication, we prepare our meals at home but apparently that’s not enough.
    It’s overwhelming to try to find what’s right for our bodies. It’s also very expensive to go gluten free. Some times I feel giving up. At this right moment it’s hard for me to type because my right hand is swelling and stiff. It’s been impossible to do regular chores and that makes me feel frustrated. I do have a craft business that it’s harder to get back to it. I tried my best to help with a little extra income. Thank you so much for this post, I don’t feel alone anymore.

    1. Post
      Author

      Hi Marcela, I am so sorry to hear about all of your struggles. It is especially frustrating when doctors do not give us the information we need to take charge of our own health. There are a few resources that I think you might find helpful. First, Dr. Amy Myers has Graves disease and has two really great books about how to reverse autoimmune conditions. They are called the Thyroid Connection and The Autoimmune Solution. In addition, I completely understand the cost of switching to a more anti-inflammatory diet. There is a podcast called “Autoimmune Wellness” and all of the season 3 episodes are about eating real food on a budget. You can check those out here. Just scroll down to Season 3 to see all the episodes available. I hope this helps, Marcela!

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