Two Years Ago I was Diagnosed with an Autoimmune Disease
Two years ago this month I received a diagnosis.
It wasn’t devastating, it was a relief. A huge one. Because everyone’s journey is different, I felt compelled to briefly share my story of being diagnosed with an autoimmune disease. Maybe someone will read this and say to themselves-”That’s right. It isn’t normal to feel this way. I need to advocate for myself.”
About 15 years ago I had my first “abnormal” blood test result. I was referred to an endocrinologist who then did some more tests. Despite symptoms of regular exhaustion and migraines, it was concluded that I was not in need of medical intervention. Everything was medically “normal”. Although I was told I had the potential to develop some issues in the future especially if, and I quote, I “ever get pregnant.”
Fast forward to about three years ago when I had my sweet little Roo. Not many people know this, but we were told that having a baby would quite possibly not happen for us, so despite some difficulties (hello insulin shots in the stomach three or four times a day, and weekly tests at the doctor) I was over the moon about having her. Being a mother has been my sole goal in life, and yes that sounds archaic and misogynistic, but it’s true. As a strong feminist, I feel that it’s just fine for me to aspire to the role of mother.
Not quite two years ago I went to the doctor seeking some help for post-partum depression. I have had depression since high school and have been off and on medication since then. I knew I needed something to help the symptoms I was having. I was terrified of the thoughts I was having, and knew that I couldn’t get over this myself.
I told the doctor what I needed, because it had been the only thing that had worked in the past for me (scarily I’ve been prescribed anti-depressants that mad my symptoms worse). As we discussed my symptoms, I thought of several that I had been experiencing that I wasn’t entirely sure were related to the depression. I was told to give the medication some time to work, and then come back and if those symptoms didn’t go away, we could discuss other possibilities.
They didn’t go away. At this point you may be wondering what those symptoms were- a lot of people with autoimmune diseases have seeming random symptoms that take a long time to figure out. I didn’t fully feel mine were random, I knew they were indicative of something more. I went back to the doctor’s office and met with one of the PA’s.
As I explained that I was exhausted (the initial symptom that led to the endocrinologist in my late teens) and migraines, they listened. I also pointed out that I had lost none of the weight I had gained while pregnant, and even while breastfeeding and pumping I had in fact gained weight. My expectations weren’t that I would be pre-baby weight, but why was I gaining when I was watching what I ate and exercising?
I was literally told, “Well, you are a new mom. But we can do bloodwork if that’s what you want.”
Did the bloodwork. Because deep inside me I knew, I knew it wasn’t just new mom stuff. There was no way I was going to be that tired or keep gaining weight just because I was a new mom.
The results came in and I was told that I maybe had Hashimoto’s Thyroiditis. Maybe. But the results weren’t very strong so it could just have been statistical error.
I waited another month, then went back and re-did my bloodwork. This time I saw the actual doctor, not one of the physician’s assistants.
He walked into the room and announced, “You have Hashimoto’s Thyroiditis. No questions or doubts about it. Let’s get you taken care of.”
It was a relief to have a diagnosis. It was a relief to know I wasn’t crazy, or a hypochondriac, or that it was just the way my life was going to be. I’ve heard a lot that people get an autoimmune diagnosis and they feel fear, or dread. I just felt relief. I didn’t care that I would have this the rest of my life, that I would have flare ups and remissions. It has a name, and I can work with it now.
Having a formal diagnosis for me has given me freedom. Freedom to forgive myself for the days I can barely move. Freedom to work hard on the days I have the energy. Freedom to allow myself grace and patience because I can’t fully control my energy levels from day to day. I can live with this. I can thrive with it. I can be me with it.