My journey with autoimmune disease is something I’ve been wanting to write to you about for a long time and I’m ready now. I want to share more of my healing story with you.
First though I have to tell you, I started writing it down and it got a little long so this is going to be a three part series I’ll add to over the next few weeks.
And I’ll warn you, it’s not a story with a neat tidy ending. This is why it’s taken me so long to write it. Because I’ve realized if you wait for the neat tidy ending to tell your story, it’ll never come.
I decided it’s time to write about it because I know there are other people at the beginning or in the middle of a similar story too. And if sharing mine can make them, or you, feel even a little less overwhelmed, scared, alone… well, that’s why I have to share it.
So, when I say it’s not a story with an ending that’s because I’m very much in the middle of it.
Have you ever heard that metaphor – the one about the girl (or guy) who decides to travel across the ocean? She goes far enough where she can’t see the shore she left, but she can’t yet see the shore on the other side either.
That’s me. Sometimes I feel like I’m in the middle of the ocean keeping faith that there even was another side to being with.
When I got out here I realized this in between space is a lot bigger and longer than it looked from where I left.
And it’s not a straight shot to the other side either. In that in between you veer right, left, sometimes the wind even turns you so you go way out of the way, or it pushes you back where you came from.
And lord knows how many times I’ve wanted to abort mission, turn this boat around and hightail it back to the safety of that familiar shore. And I’ve totally done that, too. A few times.
Healing, just like anything related to growth, personal development, creating something, is not linear. The path looks more like the route your Uber driver takes avoiding traffic. Or maybe doesn’t and you just sit and wait, cause there’s a lot of that too.
No one has the map. Of course if someone did and showed it to me I might not have decided to go. I was in my mid-20s, determined to get back to life as I knew it.
I had been diagnosed with an autoimmune disease five years prior – when I was 22.
It started pretty subtly, my feet were swollen and would hurt when I’d step out of bed in the mornings. I noticed my heels were fitting pretty snug too.
I saw a podiatrist thinking maybe it was related to all the running I’d been doing. The podiatrist did an MRI which revealed just a lot of inflammation in my feet.
He referred me to an internal medicine doc who ran some tests. Thankfully I saw one who had a lot of experience with autoimmune disease. Lupus was in her family so she had done a lot of her own research.
She was quick to suspect and had me on my way to a rheumatologist who made the final diagnosis: rheumatoid arthritis.
That was almost 9 months after I started noticing symptoms.
In the meantime, I graduated college, traveled Europe (got myself some good shoes) and then landed back in Dallas to start my career in communications at one of the largest IT companies in the world – Electronic Data Systems (EDS). Within a month after starting, the pain in my feet had migrated to my hands, and then my shoulders. I remember one day it being so hard to raise my arms to reach the steering wheel in my car I wasn’t sure if I would make it to work.
Oh ya, and I fainted at one point. At work. Full on fire truck, six firemen carrying me out on a stretcher-style. Not the impression you want to make as the newbie to the team….
All these things were happening while we still had no idea what was going on. I was waiting on doctor’s appointments to come around, time was going by and I hadn’t even heard of autoimmune disease.
I haven’t thought about that day I got diagnosed in a long time but I remember it very clearly.
The doctor was very matter of fact — “you have an autoimmune disease”
He was an older man. And let’s just say what he lacked in bedside manner he made up for in zero communication skills. He delivered the news, handed me a pamphlet and told me I just have to take medication for the rest of my life.
I remember sitting there stunned, like the wind got knocked out me, holding back tears, thinking this just can’t be possible. A disease? An autoimmune disease? What even is that? What do you mean my body is attacking itself? But I’m 22? So I just live with this? This happens to people??? OK, but, not me. There must be some mistake…
It was the first time I’d ever realized health isn’t a given. It’s a gift.
That I never even realized was such a gift.
I was suddenly aware of just how much I’d taken it for granted. How I just expected these feet to carry me, for my fingers to bend and move, my body to keep up, push through. And here it was saying, STOP.
Now, remember, at this point I had no idea that this whole holistic health and wellness world that I now work in even existed.
It was 2006. Facebook was a year old. Dr. Oz wouldn’t have his own show for three more years.
My awareness of health began and ended at the doctor’s office.
I kept it that way, safe there, for 5 years. The medication was helping. I’d have the occasional flare up which we’d treat with steroids and I was able to get on with my twenty-something life – happy hours, Whataburger at 2 a.m., American Idol on Tuesday nights. I got married, I loved my life.
With each flare though, it was like a reminder, trying to get my attention again. I was worried about all the steroids, and deep down I knew I had to try something else.
I tried my hardest to ignore it, until finally I just couldn’t anymore.
At some point my mom had given me a copy of one of Dr. Andrew Weil’s first books – Spontaneous Healing. I originally tossed it aside, as you do when someone gives you a book and you feel like they couldn’t possibly understand.
I decided to pick it up one day. It’s the first book that helped me see my body, this diagnosis differently – with hope and the potential for healing. I still have it and recommend it often.
It’s what introduced me to this whole seemingly underground world of natural and holistic medicine and the concept that the body can and wants to heal. And that when we give it what it needs, it will.
This book gave me so much hope. It made me excited really.
I had no idea what that meant exactly, but I was curious enough to want to find out.
My biggest lessons learned and takeaways for you:
- It took me 5 years after being diagnosed to open that book. Years to even allow the idea of change, healing, etc. into my brain and then my heart. I wasn’t ready, until I was. And I had to come to it on my own, in my own time.
- If you have a feeling deep down inside that there’s more to the story, something else worth exploring or anything else that can be done, follow that. Trust your intuition and let it guide you, even if it feels scary. And even if someone in a white lab coat is telling you otherwise.
Well, so, I followed it but what I found wasn’t exactly what I expected… This is getting long so I’ll pick up there next week with part II.
I’d love to hear from you.
Have you had a similar experience – been shocked by a diagnosis, felt like you’ve taken your health for granted, or had an a-ha moment when you realized there may be another way to heal?
I’m so curious to know your story too. Share with us in the comments or grab some time on my calendar if you want to chat. I’d love to talk to you more about it.