Diagnosed at 14 with an autoimmune disease and 7 months later with an eating disorder

It's interesting writing this story 15 years later. I was a teenager when I was diagnosed with the autoimmune disease and eating disorder and so I've always had "teenage brain" when it comes to the facts and specifics. It's like I've always had my own interpretation of the events that unfolded over that year... without too much questioning of what was true and what was not. And so, as I look back at this incredible book my mom kept with everything from appointment dates to test results to conversations with providers, it's uncomfortable to say the least. 

It's this out of body experience where you are looking at something you experienced with absolutely no recognition or remembrance of the experience itself. I guess I held onto the big meanings I made of the events and let go of the rest. (And I'm no therapist, but I imagine this might be quite normal?) Whether it was too painful, or I determined certain facts not important, or it's simply a case of poor memory on my part, I don't know. But as I read through this book my mom kept, I felt unsettled and uneasy as I wish I could tell that little teenager exactly what I know now. (You know, that we made it and we're fine and we're really, really proud of what we've done with the cards we were dealt.)

Maybe I'm feeling uncomfortable telling this story because the events themselves are uncomfortable. Or maybe, I'm feeling shame I didn't realize I still held from the way things played out. Or maybe even, it's embarrassment or disappointment or better yet the feeling that I disappointed those around me. It doesn't matter what I'm feeling now or why I'm feeling it because what I do know is that sharing this story is important. It's important because it's shaped every belief I now hold about health and wellness and it's important because I think it might be able to shape some of yours, too.

For example, being diagnosed with both an autoimmune disease and an eating disorder within the same year is why I believe mental and emotional health are just as important as physical health. It's why I'm committed to closing the gap between what we're taught to believe is required to care for our physical body and what we're taught to believe is required to care for our mental and emotional well-being. It's why I'm (borderline) obsessed with showing that it's possible to feel better without putting food on a pedestal.

But, truth be told, this also feels like an important story to share because what's traditionally the "main event" (the diagnosis) is really only the beginning. 

Because if I didn't go through an eating disorder just 7 months after being diagnosed with an autoimmune disease... If my mental health wasn't tested as much as my physical health... If I didn't literally and physically lose so much in such a short amount of time and at such a young age... I wouldn't be who I am now and I certainly wouldn't be doing the work I'm doing today. 

Which means that, and I'm speaking to anyone who feels like a diagnosis is the ending you never asked for, you're right and yet you're not.

You are losing a lot.
Things will be different. 
But this truly is just the beginning. 

I was diagnosed with an autoimmune disease in February 2005 and diagnosed with an "atypical eating disorder" 7 months later.

That's not the end of some great story I got to live for 14 years before I was officially diagnosed. That's not even the big turning point in the story from "symptoms" to "healed".

It's literally the starting line.

You see, those diagnoses and the 15 years it would take for me to heal mentally so that I could then also heal physically? Those 15 years have left me with way more than I could have ever imagined. 

It gave me health. (What I consider true, deep, sustainable health that isn't dependent on anything else.) It gave me evidence that I can create and have anything I want. (Better yet, so can you.) It gave me my husband, the friendships I have today, the work I'm here to do on this planet, and compassion... oh, so much compassion. 

I guess, all I'm trying to say is: It's not over. Life is just beginning. Feel what you're feeling -- because what you're feeling is valid and okay and normal -- but know that you're capable of turning this into something GOOD one day too. 

If you're looking at me like I'm crazy, or perhaps you want to punch me in the face, I get it. A lot of what I'm saying here, and a lot of what I say in general nowadays, is NOT what I expected to think / say / believe 15 years ago.

When I was diagnosed, all I wanted was to feel better... and to do it quickly.

You see, before the official diagnosis of Takayasus Arteritis (and before the onset of any symptoms), I was a competitive swimmer. I had been swimming year-around since the age of 8 and loved the longer, more grueling events like the 200 fly, 400 IM, 1650, and 200 back. While I certainly wasn't an "up 'n coming superstar", I was quick enough to start thinking about a scholarship to a DI school.

Or, at least, this was the path I thought I was walking. 

The path started to blur when I struggled to finish one lap let alone an entire 400 meter Individual Medley. All of sudden, my energy 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 was frustrated... thinking maybe he was right and I'd lost "my edge". And even now, looking back, I can't blame him. So often as it is with chronic illness or autoimmune disease, my symptoms weren't tangible. They weren't easily seen or understood. Heck, I didn't even know what was going on... other than all of a sudden I could hardly bring myself to do much of anything. 

You know what? Let's fast forward through this part, shall we?

It's normal to want the nitty, gritty details of a story but they're really not important here. Don't get me wrong. They are important -- and maybe one day I'll share them. Maybe one day I'll grab my mom's big book of medical notes and I'll piece the puzzle together. Maybe I'll ask my parents to explain what it was like. Maybe we'll share it all -- the fear, the symptoms, the complete and utter destruction of what we thought we knew. After all, losing weight from an eating disorder was just the tip of the iceberg. I (we?) also lost friends, schools, athletics, futures, you name it.

But, as you know, this is just the beginning. So, we'll fast forward.

I didn't feel well.
I got tested.
And tested again.
And some more testing.
I got diagnosed.
I got put on prednisone.
I gained weight.
I freaked out. (Hello, 14 here!)
I started eating less.
And less.
And less.
I was almost put in inpatient therapy.
I needed off Prednisone.
We tried lots of medications.
I was diagnosed with an atypical eating disorder.
I started outpatient therapy.
I switched to Remicade.
I gained weight, rearranged some beliefs, and stopped therapy.
I "graduated" from an eating disorder to disorder eating, I guess.
I was normal. 

Well, "normal".

I no longer looked sick. I could get by. I was no longer drowning in sweatshirts. No longer walked the halls of my high school before class just to keep moving (and keep burning calories). No longer struggling to make it through swim practices. No longer awake all night and falling asleep at my desk all day. No longer underweight and unable to eat one peppermint patty even when my parents begged me.

Although I was very, very far from health, I looked healthy enough to get on with life. And I felt healthy enough to do so, too. 

I graduated high school.
I found a DIII school where I could swim.
I graduated that school with honors.
I got a great job.

Those are the highlights. I also threw a lot of tantrums, ate huge plates of onion rings and dunkaroos (for breakfast), was an active participant in more meltdowns than you can imagine,  and said goodbye to just about everything as I knew it.

Dramatic, I know. But also true.

The "lowlights" include all the things I lost and it was rough for a while. But that's okay, right? It's allowed to be rough sometimes. 

This is where teenage brain comes into play again because I can't really remember when it stopped being so rough.

But I do know that eventually it was time to move from the pediatric doctor I was seeing to an adult provider. Well, during one visit that's clearly etched into my brain forever, my new (non-filtered yet insanely sharp) doctor asked if I wanted to have kids.

(Stick with me. This IS important to this story!)

I didn't want them like right then and there -- and I think he was asking because I needed to run the whole on-medication-while-pregnant conversation by him -- but I wasn't exactly prepared for such a question.

This is where I learned that the meanings we make about the situations we experience are super important.

I didn't take this innocent question to mean I might need to consider the effects of medication on a pregnancy. I took this question to mean I might not be able to have children because of my autoimmune disease. 

So, I freaked out about what this would mean for my life (I really wanted to be a mom) and I *also* made a silent declaration that I wouldn't be on medication by the time I wanted to get pregnant anyway.

I was 23 when I got clear on this desire and, while I wouldn't make good on that promise until 6 full years later, I did uphold my end of this self-imposed bargain.

Talk about using the patience I never thought I had. 

At the time of writing this post, I am off medication. My markers look great. By all reports, I'm in remission.

And you know what? It's terrifying to say that aloud. 

Can you imagine it being scarier to have health than it is to be sick? Ok, so maybe that's not quite right and truly I can't remember how scared I was when I was first diagnosed, probably very. And I do not say this to take anything away from the fear anyone feels when ill.

I say this because no one, and I mean no one, prepared me for feeling so uncomfortable when it finally came time to have health and feel better.

No one told me I would be scared sh*tless to lose that health. Scared of the shoe dropping. Scared of fooling myself. Scared of disappointment. Scared to celebrate and believe I could actually have health for the first time in my adult life.

I never thought that it would possibly be more comfortable to be sick, even though I had been sick for a while. 

I was diagnosed at 14. I'm 29 at the time of writing this post That means that I was sick for half of my life... and all of my adulthood. It's all I've known. Sure, I have memories of who I used to be, but my identity most definitely took a massive hit in the last 15 years.

And yet, I am truly grateful to have been diagnosed with an autoimmune disease and an eating disorder within the same year. The reason being that I couldn't follow any 5-step plan to try and heal naturally. Paleo, AIP... these tools were not accessible for me.

I'm grateful for the two plopping into my life at the same time because I had to design a way to heal that was totally and completely unique to me. You see, I tried -- over and over again -- to be the perfect patient and nothing ever worked. 

I changed my diet.
I changed my exercise practice.
I swapped toxic products for non-toxic companies.
I tried oils.
And meditation.
EFT.
And reiki.

I did all the "right" things... and yet I still felt like I was falling apart.

I was still only managing the autoimmune disease.
I still felt controlled by food more often than not.
Both of my tear ducts completely shut down (in the months before my wedding, no less).
My skin was red and patchy and itchy.
I caught cold after cold after cold.

It wasn't until one day only two short years ago that I would be asked a question that would change my life (and my health) forever. 

A mentor asked, "What do you want?"

I want to be healthy.
I want to stop going to doctor appointments.
I want to get off medication.
I want to be normal.

She replied, "Why do you want that?"

Because I'm tired of going to the doctors office.
Because I'm tired of calling insurance companies.
Because I'm tired of asking for referrals.
Because I'm tired of spending all my time on the phone or getting poked and prodded.

She asked, "What do you want to do with your extra time?"

I want to create.
I have dreams to fulfill.
I have things to do.
And they can't happen when I'm at the doctor.

She asked, "Why not?"

Because I don't have enough time.

She replied, "What else can't you do when you have an appointment?

Um... well...
I still walk my pup...
I still sleep 8 hours...
I still eat how I need...
I still exercise...
I still hang out with my husband...
... so I guess I only don't have time to work?

She asked, "Why might you choose to drop work when life is busy?"

Because maybe "being sick" is keeping me "safe".
Because maybe "being sick" is a reason to play small.
Because maybe "being sick" means I don't have to do the things that scare me.

She asked, "So, what really needs to change?"

I have to choose to still "do".
Even when I go to a doctor appointment.
I have to commit to doing the things I want to do right now...
Not when I heal, go into remission, or am "cured".
Life has to start while I'm "sick".
I have to stop waiting.

I know it sounds counterintuitive but this conversation led me to realize that many of us walk around not realizing there might be thoughts, beliefs, or fears getting in the way of the things we want. 

A number more of us walk around thinking food is the best (and possibly only) ticket to feeling better in our bodies. It's like we've collectively decided to believe that those who eat perfectly clean (and perfectly restricted) must be the only ones who care about their health. (And therefore the only ones who get to have it.)

I don't know about you but I tried for years to follow all the right programs. To cut out the right foods. To do what I was supposed to do. 

But while I made that vow to be off medication by the time I got pregnant, I also made a vow never to diet again. You see, once I healed from years of disordered eating, while actually sitting in church one Sunday, I made a vow to allow myself food freedom for the rest of my life. To never give food so much power ever again.

It's interesting because I only make this connection now as I reflect back on the journey. I spent so long thinking I would HAVE to eventually cut out food and be on a diet like AIP or Paleo if I wanted to physically heal my body. It was the gold standard for me. It was the only natural solution that I thought could work. 

So, I decided my job must then be to find a way to make paleo not feel like a diet. But why did I question my desires and not question the validity of the method? 

I'm not saying paleo or AIP doesn't work for some people. It's absolutely a tool. But since when is it the only tool? Since when would God not give us many tools? Since when would God not try to meet us where we are with a variety of tools that will work for a variety of people in a variety of situations?

Why couldn't I see that maybe I was allowed to keep BOTH vows? That I could get off medication AND do it without a diet. 

I spent years trying to find a way to make a diet not feel like a diet. And, don't get me wrong. We CAN restrict foods without feeling an ounce of restriction. We do so by following what I call the MERGE Method. Personally, I eat very little cow dairy and that choice does not feel like a diet. In fact, I have never, ever in my entire life (well, okay, in the last 15 years) felt more relaxed and free around food than I do right now. 

And that's all I really wanted when I made that vow in that church all those years ago. I wanted to stop worshipping food as this magic healing tool. And to recognize it as just a tool.

Just. one. tool.

One tool that's no better than any other tool. Including, as I've come to recognize, the tool that uses our own thoughts and beliefs. 

Remember how I said that my experience of these two diagnoses within the same year has shaped my current beliefs about health and wellness?

If I didn't get hit with this physical, mental, and emotional experience all at once, then I might not have struggled so much to use food to feel better. Maybe I would be one of those success stories we see plastered all over Paleo and AIP blogs. And sure that would be fine and good, but it also might mean that I wouldn't have had to consider any other healing tools. I wouldn't have needed to explore tools that might be more accessible for more people on the journey to health. For example, I might not have found restorative yoga. I most likely wouldn't have found what I now consider to be the most accessible healing tool in the entire world: the mind. 

That's why I say clearing anything in the way of my desire for health was an important part of the process. I had to get my mind on board with what I wanted for my body. And my mind needed to know that the desire was safe. 

You see, and this might sound crazy, but the moment I had the conversation mentioned above (the one with my mentor), I no longer felt attached to the autoimmune disease. Maybe I was shedding the identity... maybe I was living in the outcome I wanted... but, either way, I started to disassociate myself with that label and TRUST that the detachment was okay.

The autoimmune disease could be part of my past but it no longer needed to dictate my present or control my future.

Let me clarify here that nothing else changed at this time. I was on medication. I was seeing my doctors. I was simply mentally and emotionally distancing myself from the disease. 

Then, about a year later -- prepare yourself, this is going to sound even crazier -- I had an intense moment while journaling where I felt like I let it all go. I shed literal tears as I released what had been a part of me for so long. You see, I had spent that past year doing a LOT of inner (and outer) work to optimize my body for healing and this moment will forever mark the moment I believe I my healing was inevitable. 

Of course, I still moved forward working with my doctors every step of the way. Under their guidance, I began to taper off medication and watch my body as I did. (Because, I am not a doctor and we should ALWAYS be working with professionals.)

It's just that, no matter how long it takes, I believe the moment above was the moment my health and healing became inevitable. 

I am (now) grateful that eating a perfectly clean diet wasn't accessible to me, because it's THAT background that led me to look at every other tool that was. 

At the time of writing this post, I've been off medication for just shy of 5 months and I feel better than I've ever felt.

Does that mean I know without a shadow of a doubt this is the moment my "inevitable health" will manifest in my physical body? No, of course not. But you know what else? It really doesn't matter either way.

It's finally safe for me to have health... but it's still be okay for me to be sick.

Because neither health nor illness say anything about who I am as a HUMAN. (Just like your health or illness doesn't say anything about who YOU are.) They don't dictate our worth, our value, or our potential for good in this world. 

Both are neutral. Both are okay.

I want to master the energy of health simply because it's really doggone fun to feel good... and I want to help myself and others see how good we get to feel. 

​But it's always, always, always true that life doesn't start once we're healed. Life doesn't begin only once we're in remission. 

You don't have to be cured, or without pain, or off medication, or eating some perfect diet while being the perfect patient in order to live a life with meaning, purpose, value, happiness and love. 

Explore self-care or natural healing approaches -- things like restorative yoga or this energy of health we're talking about here -- not to complete you... not to make you whole... not to prove your capacity for service, impact or {insert anything else here}... but from a place of love, acceptance and curiosity. From the place that knows a "cure" is not the only signal of success.

​If you made it this far, I would love to hear from you! Does my story resonate with you? Are you trying to bridge the gap between your physical and mental health? Possibly because you too have been diagnosed with an eating disorder and an autoimmune disease (or chronic illness)? If so, I would love to hear from you in the comments below. You can also send me an email at hello@thewellnessboulevard.com.

For more on my story and what I've learned about the energy of health, join me inside The Wellness Boulevard.