Here at Autoimmune Wellness, we’re all about inspiring and encouraging people with autoimmune disease to take healing into their own hands. If I’ve learned anything in the seven years I’ve been at this work, both personally and professionally, it is the incredible capacity that dietary and lifestyle changes have to affect health outcomes for those who have no, little, or sub-optimal options working exclusively within the conventional medical system. Many of you are familiar with my story as well as the stories of recovery that we post here on the site to share the incredible healing potential of the Autoimmune Protocol.
Despite that, there are two words I feel do a disservice to the autoimmune community as a whole when used to describe the healing journey. They are remission and cure.
Remission can be defined as the absence or lessening of symptoms caused by a disease. Cure can be defined as having no traces of a disease being present.
Both of these words are used frequently in the treatment of certain medical conditions like cancer, and this is the context in which most people are familiar with them. For instance, when a person completes a treatment for cancer and no symptoms are felt or traces found, they enter into remission. At a certain point (usually a matter of years, dependent on the type of cancer) their doctor declares their cancer cured.
While these words are helpful and well-understood when speaking about cancer recovery (and even other medical conditions unrelated to cancer), I don’t believe that they work well to describe the outcomes of treating or managing autoimmune disease. The emotions that come along with using remission and cure as descriptors or benchmarks can cause more harm than good to getting into a productive healing mindset.
Some of you might be thinking… “Wait, Mickey. I’ve heard you say a bunch of times that you don’t experience any Hashimoto’s symptoms anymore. Doesn’t that mean you are in remission?”
You’ll notice in my work here and in every podcast interview and live talk I do, I have never used the words remission or cure to describe my own journey, even though I have regained my health (by my definition — more on that below!) through a combination of diet, lifestyle, and conventional medicine. Instead, I like to say that my autoimmune diseases are well managed by the daily activities I do to continue feeling my best.
This concept is a tough nut to crack, especially in our world of sensationalism on the internet. Fortunately, a lot of others have been thoughtfully tackling this topic as of late (hat tip to Chris Kresser for his recent article What is Health? And Eileen Laird for her podcast episode The Pursuit of Perfect Health with Dr Terry Wahls). In this article, I’m going to explain my reasoning on why I don’t like using these words when talking about autoimmune healing, and how to reframe our concept of progress on the healing journey.
There is no cure for autoimmune disease
First, it is important to understand that there is no cure for autoimmune disease. Science has shown us that generally speaking, once the immune system starts attacking our own tissues, there is no intervention we can make that will stop it forever. This is why many conventional treatments for autoimmune disease involve suppressing the immune system or managing the inflammation that an autoimmune disease causes. We can tinker with disabling or weakening parts of the immune system responsible for the attacks, or we can try shutting down certain inflammatory pathways. We currently don’t have a tool in our toolbox to get the body to stop attacking itself.
I’m sharing this not to be depressing, but to inject some realism in this discussion. In order to truly live well with autoimmune disease, we first have to accept that our conditions are likely not curable in the traditional sense. Now, this does not mean we can’t make healing progress or live vibrant, fulfilling lives. This also doesn’t mean that we can’t reach a state with no or little symptoms. In light of that, I believe taking a realistic approach sets us up for success in learning how to navigate the road ahead, including flares or setbacks.
The inaccuracies of remission
Next, the concept of remission. While periods of remission are hallmarks of some autoimmune diseases (like relapsing-remitting multiple sclerosis), most people are confused about pinpointing when they have achieved remission. I think this confusion is because the word remission doesn’t accurately describe the ebb and flow of how most autoimmune diseases present themselves. Is it when antibodies return to normal? Or when a person doesn’t have symptoms? What if this person has no antibodies but still has symptoms of their disease? Or if they have antibodies but no symptoms? Does it still count as true remission if they eat a piece of bread or a tomato and then their symptoms return within 15 minutes? How does it work if they are on disease altering or modifying medications?
Some diseases have clinically observable signs remission has been reached — like the absence of disease activity in the colon in a person with Crohn’s. But how does that apply to a disease where the disease is not fully visible–like Hashimoto’s or Lupus? As you can see, using remission to describe autoimmune disease can be tricky.
In addition, remission implies a stable state of health that has been reached and doesn’t easily account for flares, which are common even in those that have well-managed autoimmune diseases. I don’t believe the word provides enough space for an autoimmune patient to experience the ebb and flow of living with autoimmune disease without additional emotional stress from adding the label.
Lastly, the experience of living with autoimmune disease is not only misunderstood on the patient level, but even more dramatically so for family members and friends. We are already at a disadvantage when teaching those support players in our lives about the nebulous nature of autoimmune disease, but I believe using the words remission or cure further deepens any misunderstandings here.
If we can accept that autoimmune disease is not curable, and that remission is not an accurate word to describe the healing journey, then what is the best way to speak about our progress?
How do you define health?
In order to hone in on how to best speak about progress on the healing journey, I think it is most helpful to first start by doing some work exploring what your definition of health is.
While most people define health as simply the absence of disease, some find this description too simplistic to accurately and honestly describe what health looks like. For those of us with autoimmune diseases, it is demoralizing to think that we will never be “healthy” because we suffer from incurable diseases and thinking this way can get us in a negative mindset.
As I’ve gained experience on my healing journey, my definition of health has shifted. In the beginning, I was very focused on my physical state — I put a lot of weight in lab tests and symptoms. I really wanted to see those antibodies return to normal levels. Looking back, there was a time in my journey when I was feeling quite well, especially in relation to the health crisis I had just experienced — I had returned to work part-time, was able to do more activities outside the home with my friends and family members, and had returned to some of my favorite hobbies. But when I thought and spoke about my health and my body, I remember thinking and talking about myself like I was still so sick and still had so far to go. I think this actually delayed my progress, as I was both engaging in negative self-talk and was missing out on celebrating those wins.
One step in reframing my definition of health was realizing I was connected to quite a few people who lived vibrant, joyful, and fulfilling lives despite debilitating health problems. One friend of mine suffered from cystic fibrosis, a genetic condition that affects the lungs and comes with persistent life-threatening effects. I watched her navigate not only her difficult health challenges with an incredibly positive and graceful energy, but also watch her realize her dream of becoming a mother, despite the challenges and odds. Was it fair or accurate to say she was not healthy? I was incredibly inspired to see her live her dreams despite all of this, and it really got my gears turning as to how I could actually define health for myself.
Now I have expanded my definition of health beyond the physical and incorporate mental and social elements. I feel my healthiest when I am able to deeply connect with the people I love and do things that bring me joy.
I absolutely love Chris Kresser’s article on this topic, What is Health, which takes a deeper dive on this concept. And I would encourage anyone who is interested in exploring more to head over and check it out.
Why I use “well-managed” instead of remission or cure
Once you come up with your own definition of health, you can set goals and decide what kind of benchmarks (if any) you are going to use to gauge your progress and how to speak about your disease (both when engaging in self-talk, and in talking with others).
Personally, I like to use the phrase well-managed to describe my autoimmune conditions because I feel like it accurately reflects the fact that I have to put in consistent work (including but not limited to diet, lifestyle, and medication) to manage my two incurable diseases.
For me, this reframe releases the pressure of trying to define or meet the threshold of remission. I continue to have positive antibodies (although only a fraction than at diagnosis), even though I don’t have symptoms of my disease (most of the time!). Now I have enough space to experience a flare without having to worry about if I am here nor there. Lastly, when I tell my personal healing story it gives others in the community a realistic picture of what living well with autoimmune disease could look like and has less of a chance of giving anyone false hope.
As my definition of health has expanded above, I not only look at physical, but mental and social elements when evaluating how I’m feeling. Some questions I ask myself are “Do I feel connected to those I love?” “Am I doing things that bring me joy?”
Perfectionism and comparison
Lastly, I wanted to touch on two ways of thinking that can creep in and cause mindset roadblocks.
It can be tempting to think that we have complete control over our health outcomes and can achieve perfection by “doing the right things.” The truth is, while we can make changes that can affect outcomes, this is far from a guarantee. A certain input does not equal a guaranteed output, and the desire to be perfect in order to control an outcome can often make healing more difficult.
If you find yourself getting stuck here, check out our article from the archives, I Can’t Try AIP Because I’m a Perfectionist.
Next, comparison. It can be so tempting to look at another person’s healing journey and either think that if you do the same things they did, you will get the same result, or be upset that they got more mileage out of the same changes than you did.
Not only is wellness going to have a different definition for each individual, but that actual path to healing is going to vary widely from person to person, even if they share the same disease. Resisting the urge to compare sets you up for success to find joy in discovering what works for you, not anyone else, and truly taking ownership of your health.
What is your definition of health, and have you noticed your ways of speaking about your disease shifting as you progressed through your healing journey? I’d love to know in the comments!