The Stages of Autoimmunity

These "stages of autoimmunity" (aka the stages that come alongside the management of an autoimmune disease) are something I've been inspired to put together thanks to my mom's first post on The Boulevard Blog! (Mom shared how she knew that something wasn't quite right and that her child might be ill.)

I was so excited to read these words from my mom because, while I can share 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 the experience more factually than I do. (Because she understood way more than I did at the time.)

Here and there, my mom will be sharing the thoughts, feelings, and fears she experienced while I was getting tested and eventually diagnosed… as well as how she raised all three of her kiddos while suddenly having to spend way more time inside a doctor's office. 

Anyway, as I read the first blog post from my mom, which basically highlights those first moments we realized something was wrong, I began thinking about the stages of the autoimmune journey as a whole. Not from a physical or medical standpoint (I'm not a doctor!) but from a patient's more mental and emotional perspective. 

Because life changes when you or someone you know is diagnosed with an autoimmune disease or chronic illness. And I think it can be really valuable to open up more conversations in which we're discussing what those changes might actually look like.

Here's what I'm calling the REGAIN Journey: The 6 Stages of Autoimmunity for Patients.

1. Realizing something is off.
2. Extensive testing. 
3. Getting a diagnosis. 
4. Action and treatment.
5. Isolation, denial, and detachment.
6. Now what?

---> (1) Realizing something is off.

What's going on?
Is something wrong?
Am I making this up?
Is this serious? 

I was diagnosed at age 14 with an autoimmune disease named Takayasus Arteritis (and much later with seronegative rheumatoid arthritis). I talk a lot about this diagnosis and what happened afterwards (an eating disorder, for example), but I sometimes forget to talk about what was going on beforehand. 

The years before I was diagnosed (and before the onset of any symptoms), I was a competitive swimmer. I had been swimming year-around since the age of 8 and I was thinking about a scholarship to a DI school. 

Things as I knew them changed when I struggled to finish one lap down the pool let alone an entire 400 meter Individual Medley. My energy levels plummeted, my hands went numb and blue during practices, and I sat out sets shivering on the bench. My coach (as awesome as he was) thought I was lacking motivation. That I wasn't trying and needed to get tougher or push through.

At the time, I thought he was right.

Maybe I DO just need to get it together.
Maybe I AM losing my edge.
Maybe I COULD use more willpower.
Maybe it IS me being lazy.

The thing is... when your illness is "invisible" (as much of autoimmune disease is) your symptoms aren't tangible. They aren't easily understood because they're aren't easily seen.

Which means, it's REALLY common to question ourselves as we begin to notice that something's off. We're in pain, we're uncertain, and we're confused, so we take to Google or our favorite search engine for answers. We want to see what others have experienced and to better understand whether what we're feeling is "something". We want to know if our pain / symptom / fear is actually "real". 

---> (2) Extensive testing. 

This is everything that's going on before the diagnosis.... but after we realize that what we're experiencing needs to be addressed by a doctor. This stage might include heightened symptoms and it probably includes things like 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."

​This probably looks like speaking with our primary care provider and possibly having that PCP refer us to a specialist (or many specialists). We're doing our best to exhaust all of our resources and figure out what's going on. 

There's often a LOT of frustration in this stage because this is a long, draining and anxiety-filled process. And because we haven't been feeling well for far too long. You see, it can be hard to get solid, concrete answers in this stage. We're unsure of what's happening in our bodies and sometimes our doctors are too.

Because there is so much exhaustion (and possible anxiety) in these first two stages, it can be really 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 really 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. Especially because doctors have to rely heavily on us for this important information!

In this stage, it's normal to question whether or not you'll ever get an answer. It's normal to question yourself all over again. It's normal to question if this will be your life forever and ever and ever. Basically, it's really normal to question just about everything... from what you're feeling to what you're being told to what's even wrong in the first place.

---> (3) Getting a diagnosis. 

I know that not everybody gets an official diagnosis, but at some point we figure something out. (Even if it takes awhile.)

Maybe a doctor hones in on a specific autoimmune disease or chronic illness. Or maybe you've done so much trial and error, while working under medical supervision, that you have a better understanding of possible root causes or triggers.

However they come... once we get the first few answers, we feel a sense of relief. There's finally a reason as to why this is happening. Better yet, having a reason brings a sense of hope that we're finally going to feel better.

If there's an answer, there has to be a solution, right?

In this stage, the validation of what we've been experiencing is one of the things that feels the best.

Because autoimmune disease is so often invisible, we tend to field a lot of questions about whether we're "actually sick". About whether or not we're making it up... and whether this couldn't be "just all in our head". This third stage means so much to us 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 information.
It's time to use that information to finally feel better.

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 something doesn't work and we have to try multiple different  plans.... or when we have to make changes to our lifestyle that we didn't exactly want to make.

As soon as we start to think, "This is it! I'm finally going to feel better!", we may also wonder, "Why is this happening to me? I didn't ask for this. I didn't want this."

For me in particular, getting diagnosed gave "formality" and answers to my struggles in-the-pool, but internally I still struggled to feel better. Don't get me wrong. I was grateful to be put on a medication that would actually improve my symptoms and give me more energy (though that first medication would certainly not be the last). And I was relieved to have my "reason". But one thing remained... I still wasn't going back to who I used to be. On top of that, it was hard for others to understand because there was nothing visible to showcase these (now here-to-stay) differences in my life. 
​
---> (5) Isolation, Denial, and Detachment.

When overwhelm kicks in, when things don't go exactly as we'd hoped, or when the permanence of our situation sets in, we may experience isolation, denial, or detachment. In other words, we may experience grief in a variety of ways.

We may begin to isolate ourselves from our bodies and from what we're actually 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."  As we isolate from our bodies, we may also start isolating (whether intentionally or not) from friends and family members who question our choices or decisions.

This stage can also manifest as denial. We may 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".

And these are just two of the ways this stage can show up.

Anger. Disappointment. Embarrassment. Frustration. Sadness. Anxiety. Exhaustion. 

We can experience MANY feelings around our bodies and lives before, during, and after being diagnosed with an autoimmune disease or chronic illness.

It's REALLY hard to live with a body that's playing its own game with its own rules. It's really hard to feel like you can't trust yourself. Like you never know when the pain will set in or if you won't be able to get out of bed in the morning.

It's a lot to be diagnosed with an autoimmune disease or chronic illness. And it's normal for that "lot" to start impacting how we feel.

I was diagnosed at a young age so I don't remember everything about the months and years that followed. I mean, I remember the big stuff, the meanings I made of the events, and the people who were there to help me through.

But I don't remember every conversation, every tantrum, or every good OR bad day. I mostly remember the stuff I figured wasn't supposed to happen.

I remember being asked to bring a check for $10,000 if I wanted treatment. I remember throwing a tantrum on the floor when my brother came in with a verse from the Bible: 1 Corinthians 10:13. I remember cancelling plans *on* a friend's birthday because I wasn't actually in remission and really needed medication.

And I remember sitting on my bed late at night telling my husband I wouldn't fight if another test came back wrong.
​
Whatever it is that you're feeling in this stage (which can come at ANY time - healing isn't linear), know this: It's okay to feel the big things. 

You might want to grab a favorite blanket, head to a closet, slide against the door all the way to the floor, and feel every single thing that's coming up for you. Or perhaps you reach out to a trusted friend and ask for a moment to speak... without a response and without any advice in return. Maybe you meditate or speak to a therapist or do what I do to move through these moments.

While it seems easier to put away the hard stuff... to take the "ugly" things and shove them into the very back of the closet where we hope they'll stay out of sight and out of mind... without feeling the full range our emotions we can't... well... feel the full range of our emotions.

Meaning, we can't feel all the good, beautiful, JOY that can come from this journey if we're not also willing to feel the hard, difficult, pain. 
​
Note: It really is important to mention that none of this is linear. We can move from Stage 1 into Stage 5. We can also enter Stage 6 and next find ourselves in Stage 5. There's no right or wrong way to heal.

---> (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 some sense of peace with what we're experiencing and we're ready to explore what it means to thrive in the face of the cards we've been dealt.

"How do I manage this? How do I still do the things I want to do?"

This is different from Stage 4 (action and treatment) because we're feeling more empowered here. We've accepted this new reality and want to integrate it into our existing goals. This isn't something only and ever happening to us. This is something we can work with. Something we want to use 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, these stages of autoimmunity are not linear. While we accept this reality, and start to wonder what to do next, we may find ourselves in a spot of overwhelm. We may find ourselves tired, defeated or discouraged. We may find that our changes don't last, that we really just want to feel better, or that we've exhausted all of our resources. No matter what this journey looks like for you, Stage 6 is always here asking, "Now what? What do I want to do next?"

Thank you so much for reading all the way to the end of this article! I'd love to hear from you. Have you found yourself in one of these stages? Are you experiencing something I didn't address here? Share with me below!