What Is A Diagnosis, Really?

In 2007, I had my first intense flareup - which included vertigo and nearly full body hives that drove to me the edge of insanity with itching. For six months, I visited more than eight doctors of all kinds, trying to get to the root cause and was given diagnoses ranging from scabies to skin sensitivities to a possible food allergen.

My journey went forward from there and by 2011 I was finally diagnosed as Celiac. Whew, I thought…now I can treat and move forward. But not so fast! I felt a great deal better cutting gluten out of my diet, but it wasn’t long before my body started backsliding again with symptoms creeping back in for no reason.

In the decade since, I’ve been through so many doctors offices and exams, receiving many new diagnoses along the way. I’m a bit of a collector now - Celiac, hypothyroid (but wait, it might be Hashimotos now, so let’s keep testing), Allergic to dairy and eggs, Psoriasis, Deviated Septum, Congenital Leg Length Defect, generally Autoimmune and of course, Chronic Reactivated Esptein Barr. I have so many friends and family members with even more to add to their collection - Lupus, Rheumatism, Chronic Fatigue, and beyond.

So many of us have had a journey like mine, spending months if not years and lots of blood, sweat and tears trying to find a name for what we are experiencing. Once I found Epstein Barr, my relationship to finding a diagnosis changed. When you really break down most Autoimmune diagnoses, they are simply a collection of symptoms. This is why they are so hard to get fully diagnosed at all. And then once you have a name for your suffering, does it really make you feel better? In my case, with the first few labels, I actually felt worse. Much worse. The changing of your identity to be a “sick” or “diseased” person is nothing to joke about, regardless of what your diagnosis or label is. It can fundamentally change your relationship to your body, typically leaving you mistrusting your body and its ability to heal.

Let’s think of something benign as an example. What is the difference between stew, pot roast and soup? Not much really - the amount of liquid, a few minor ingredients, but the components are the same. I believe this is similar to Autoimmune life. Some of us are having a stew experience and others a pot roast, but the core experience is the same. My genuine belief is that the medical research we’re seeing roll out nearly every week linking viruses like Epstein Barr to these diseases will only continue to explode. We’ll continue to learn that our bodies are in fact NOT attacking themselves, but are working so damn hard to fight a pathogen that we have some side effects from the battle. You aren’t winning over your body, you are winning because of it.

I share all of this to help us all reshape the way we think of our personal labels and our health journey. If it helps you to think of yourself as an Autoimmune Warrior, wonderful. For me, I prefer to see myself as a badass Warrior who happens to have a whole bunch of battle wounds nobody can quite perfectly name.

You aren’t winning over your body, you are winning because of it! Healing blessings to you all.