Let's talk about the stages of autoimmunity. This is something I'm inspired by right now, because my mom has officially started writing for The Boulevard Blog! Not long ago, she sent me her first blog post draft about how she knew she had an ill child. (How she knew that something wasn't quite right.)
I am so excited about this because while I can share about my autoimmune journey from the patient perspective, I was only a teenager when I was diagnosed. Not only does my mom share about the autoimmune journey from a parent and a caregiver perspective, but she also remembers WAY more than I do. (And honestly understood way more that I did at the time.) My mom will be writing about the thoughts, feelings, and fears she experienced while I was getting tested and eventually diagnosed… as well as how she raised and protected three children while suddenly having to spend way more time at the doctors office than she ever thought.
As I read this first blog post from my mom, I began thinking about the stages of autoimmunity, the stages of an autoimmune disease, as a whole. Not from a physical standpoint, but from a more emotional and less tangible standpoint. As I was thinking about my journey, and the experiences of those I know in similar situations, I put together what I call The REGAIN Journey.
The REGAIN Journey: 6 Stages of Autoimmunity
(Sometimes I also refer to these stages of autoimmunity as the stages of healing. I believe the journey to healing starts as soon as we get sick.)
---> (1) Realizing something is wrong.
This is, naturally, the first stage of autoimmunity. We start to wonder... Is something wrong? Or could I be making this up? Do these physical symptoms deserve a diagnosis? Is this really serious?
Before I was diagnosed, one physical symptom I experienced was fatigue. I was exhausted. But I was also a competitive swimmer. So when I was no longer able to keep up in practices, I started to wonder. Am I just lazy? Have I lost my willpower? Am I making excuses?
In this stage, we're often questioning ourselves. We're in pain, we're uncertain, and we're confused. And we often take to Google or our favorite search engine for answers. To see what others have experienced and to see if what we're feeling is real. If the pain is actually something.
There is a lot of fear, anxiety, and uncertainty in this stage.
---> (2) Extensive testing.
Stage #2 is extensive testing. This is everything that's going on before the diagnosis.... and after we decide that what we're experiencing needs to be addressed by a doctor. This stage often includes heightened symptoms, blood work, MRIs, CT scans, etc. We're saying to ourselves and others, "Something is not right. I'm sure of it. And I need answers."
We typically talk to our primary care provider and maybe this primary care provider refers us to a specialist. We're essentially exhausting all of our resources and options when it comes to figuring out what's wrong.
There's often a lot of frustration in this stage of autoimmunity, and a lot of exhaustion. This is a long, draining, and anxious process and we haven't been feeling well for so long. Plus, no one seems to give us really solid or concrete answers. We're unsure of what's happening and sometimes even our doctors are unsure of what's happening. We're simply trying to do everything possible to figure out what's going on.
Because there is so much exhaustion and anxiety in these first two stages, it can be helpful to stay off Google as much as possible. Sure, gather basic facts about any results or information you've received, but try to steer clear of stories, chat threads, and personal blogs. Staying away from these can be SUPER hard to do, but spending at least some of that time writing in a journal and reflecting on how your body feels will be much more productive. Often, since much of autoimmune disease is invisible, doctors need to rely heavily on us for this important information.
---> (3) Getting a diagnosis.
I know that not everybody gets an official diagnosis, but at some point along the way we find something out. (Even if sometimes this takes awhile.)
Maybe a doctor hands down an official diagnosis. Or maybe we've done so much trial and error that we have a better understanding of what a root cause may be. And we feel a sense of relief. Because there's finally an answer as to why this is happening. Even more, we finally think we're going to feel better. Because if there's an answer, then there has to be a solution, right?
In this stage, we're so happy to finally feel validated in what we've been experiencing.
You see, as mentioned briefly, autoimmune disease is invisible. Which means we can't see it with the naked eye. It's not something physical that we can touch and put our fingers on. And so we tend to field a lot of questions about whether or not we're actually sick. About whether we're making it up -- or it's all in our heads. This third stage means so much because we're finally, fully seen. There's a "real" reason we're feeling this way.
---> (4) Action and Treatment.
After we get a diagnosis, or better understand root causes, we move into action and treatment. We've got a plan. It's time to do something. We have concrete steps to take.
Here, we're feeling this combination of hope because we're taking action to feel better... and then also potentially overwhelm when that treatment doesn't work as fast as we want it to.... or when we don't actually feel better as soon as we expect to.... or when it doesn't work and we have to try multiple different treatment plans.... or when we have to make changes to our lifestyle that we didn't want to have to make.
We start to wonder, "Why is this happening to me? I didn't ask for this. I didn't want this."
This action and treatment stage looks like #allthethings. We're throwing a lot of spaghetti at the wall just hoping something sticks. Because of that, we often end up feeling frustrated along the way and may enter Stage #5.
---> (5) Isolation, Delusion, and Detachment.
We may experience isolation. And when I say isolation, I mean isolating ourselves from our bodies. We isolate what from we may actually be feeling. We may say, "I didn't ask for this. I'm not going to stand for this. I'm not going to do X, Y, or Z that my doctor recommended. I am going to live the life I want to live." We isolate from our bodies, which may lead to isolating from friends and family members who may begin to question our choices and our decisions.
We may also experience delusion in this stage. We think, "This can't really be happening. I can still do all the things. I can still do everything I need to be able to do, everything I used to be able to do, everything I should be able to do. Nothing has really changed. This isn't going to affect me." We push through, we keep fighting, and we don't allow ourselves to make "excuses".
This stage also includes any feelings of depression we may experience. It's the stage where we may want to numb out or detach completely from what we're going through. We realize we can't do everything we used to be able to do and that our plans for the future might be changing.
Now, it's important to note that none of this is linear. Which means we can go from Stage One into this Stage Five. We can notice symptoms pop up and we can isolate or detach. We can also enter this Stage Five after a diagnosis and before we enter action and treatment. In fact, I recommend that we feel before we fight.
---> (6) Now what?
This final stage is our place of acceptance. The place where we start to say.... "Now what? What's next? Where do I go from here? How do I move forward?"
We've come to peace with what we're experiencing and we're ready to explore what it means to thrive in the face of these cards we were dealt.
"How do I manage this properly? How do I still do the things I want to do? What exercise practice might I want to explore? Which stress-management technique sounds interesting to me?"
This is different from Stage Four (action and treatment), because we're feeling really empowered here. We've accepted this new reality and want to integrate it into our existing goals. This isn't something happening to us. This is something we can work with. Something that can be used for our good. We start to explore our options in a more holistic, all-encompassing way, possibly looking at both natural treatment and conventional medication.
As mentioned before, the stages of autoimmunity are not linear. While we accept this reality, and start to wonder what to do next, we may also find ourselves in a spot of overwhelm again. Or, perhaps we find that the changes don't seem to last. We might bounce back into Stage 5, before we're ready to re-enter Stage 6 looking for a solution that works better. Perhaps looking for a more gentle approach to the chronic illness conversation.
Either way, Stage 6 is always here. And it's asking, "Now what? Where do I go from here?"
It's this Stage 6 that many members of The Wellness Boulevard find themselves in. They're wondering which exercise practice to try. Or how to find a great meditation teacher. They're exploring non-toxic living and different food strategies. They're figuring out what combination of professional and self-care works best. They're moving through Stage 5 when those moments pop up (because they do) and even sometimes working through earlier REGAIN steps when new ailments appear. They've learned that healing is not linear. That it's a journey some of us are on for a while. And they're learning that is can be easier with support. If this resonates with you, we'd love to have you join us!
(P.s. You, of course, don't have to be in Stage 6 to join The Boulevard! These stages of autoimmunity don't have starting and stopping points -- and every step of the way is better when you get to walk with those who have walked before you.)
I'd love to know if you've ever found yourself at any of these stages – or if you’re experiencing a stage I didn’t address here. Plus, if there are any moms reading with children who have been or are in the process of getting diagnosed… please reach out. Especially if you want to read something in particular!