When One Autoimmune Diagnosis Leads to Another

My mom tells me a story so often I feel like I remember it. I’m 4 years old at a birthday party, all the children are running around and playing. But not me. Where am I? I’m lying on the ground under a table. No, I’m not hiding or throwing a tantrum or even upset. I’m just too tired to play. She takes me to a doctor to have me checked for anemia, but the tests come back negative.

 

Now, fast forward to my freshman year of high school. My lifelong battle with eczema has developed into an unknown skin problem on my face that requires testing for psoriasis. The biopsy test result comes back with an odd note, written urgently in all caps and underlined multiple times: “She needs to see her GP ASAP!” The dermatologist kindly passed us the message with no explanation. So I went, thinking as odd as it was, nothing was really that wrong. My doctor though stared at some numbers that had been forwarded to her, at me, then back at the numbers. Eventually she just asked, “How are you here right now? You shouldn’t be able to get out of bed.” My iron counts were so low that they were nearly off the scale.

To this day it doesn’t make sense to me. I was in marching band which is pretty taxing, I’d been a dancer for 11 years… How had it never come up before then? Yeah, I was tired all the time and had all the symptoms of anemia, but I just didn’t have the time to let it slow me down. Everything I experienced had just been a part of my life for so long I didn’t ever question it.

The summer before I left for college I had a physical. My doctor told me I had slight scoliosis – which I decided must be the explanation for the chronic pain and discomfort from my shoulders to my knees, and she wanted me to get an ultrasound on my thyroid. The ultrasound came back clear and my thyroid was never mentioned by her again.

At college I set up an appointment with a doctor and sat there and tried to explain to him why I was there, but I was really struggling to find the words to describe my symptoms. I think I may have actually told him at one point, “You know that feeling when you know something isn’t right but you don’t know how to describe it?”

As I tried to explain the difficulty thinking or concentrating, the exhaustion that seemed excessive as a student who didn’t party and went to bed at 10:00 p.m., the hair loss even though my iron counts were normal, he asked if I’d ever had my thyroid tested. I told him about the ultrasound. Appalled that there was never any blood work done when an enlarged thyroid was detected, he sent me immediately to the lab.

That led to years of blood work from every six weeks to every few months, trying to get the right dosage. The day I had a family member diagnosed with Hashimoto’s thyroiditis, I called my doctor. Sure enough, my TPOs were elevated. I’ve lived most of my life on a gluten-free diet, so I researched an autoimmune diet and started following that. Amazingly, it helped. A ton.

But something is still wrong – I still have symptoms of something deeper that haven’t gone away. My life sometimes feels like a revolving cycle of blood work and appointments with various specialists. It scares me a little when the doctor says a blood test shows need for further testing, but in the same breath it brings a little relief because maybe we’ll find the answer. Maybe I’m not making this all up, maybe there’s a reason my body sometimes is in so much pain I can hardly hold back the tears, maybe there’s a reason why I can’t get out of bed some days or even find the energy to move my limbs.

I thought the diagnosis and treatment of one autoimmune disease was going to help me be more OK physically and emotionally, and it has to some degree. But as I search to uncover the mystery of what my body is still struggling with, I’ve been taught a great deal about patience, self-love, who my friends are and one thing above all: I am stronger than I realize.

This body wants to live and is fighting so hard to do so. So in the meantime, I try to be gentle with it. I forgive it for having hard days. I listen to it the best I can so maybe one day it won’t have to fight so hard to survive.

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Thinkstock photo via megaflopp.