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Why I Struggled for Years to Accept My Lupus Diagnosis

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From the time I was little, I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right.

I’ll take you back to 2002 when I was 15 and it became imperative I get “in shape.” Maybe it was peer pressure, boys or the developing girls, but all I know is I wanted to be able to look good and not breathe heavily while walking up a flight of stairs.

I had just bought some new sneakers. This is step one for starting a new workout regimen because this is the magic that creates motivation. I put those pups on and got my butt in gear. Now, I will be honest. I definitely ran under one mile. I attributed this to the lack of sidewalks and the rolling hills of upstate New York. Hey, it was day one. Day two would bring better results. Right? Wrong.

The following morning I woke up in agony. My legs ached, my arms ached, my face ached. I just assumed the obvious… I am really out of shape. Fortunately, my mother is a nagger, and I mean that with love. She was my biggest advocate and for that, I am so blessed, because I know not all people have their own personal nagger. Occasionally, we all need someone to look us in the face and say, no, something isn’t right here. And for that, thank you, thank you, thank you to my mother who dragged me to every single appointment.

The road to a diagnosis was not a quick one, but in the scheme of lupus it was: I was diagnosed within one year. Within that year came multiple doctors and multiple misdiagnoses. First I “had” Hashimoto’s disease, then I “had” rheumatoid arthritis, eventually, I would be told it was lupus. In order to be diagnosed with lupus, you need to fit into a certain checklist because there is not a single distinguishing feature of lupus:

  • Butterfly rash? Yup.
  • Fatigue? You bet.
  • Positive ANA? Positive!
  • Painful or swollen joints? Unfortunately.
  • Sensitivity to the sun? You know, I should own stock in sunblock…

The indecisiveness of the diagnosis is what contributed my own refusal to acknowledge I had a disease. I will be truthful with you now and say, I was not always been the best lupus patient. I have intentionally forgotten to take my medicine, I have lowered how many pills I take because I don’t think I need them, I have skipped eye exams I have to go to because the medicine I take has side effects that can damage my vision permanently. Why was I self-sabotaging? Somewhere inside, I hoped that if I didn’t take the medicine, I didn’t have the disease. If the symptoms no longer presented themselves, it must have been one big misunderstanding.

Well, the truth is, I have lupus. It took years to accept I do. More importantly, it took years to believe I can still have a meaningful life.

One reason I write is due to the confusion and fear I faced when going through the initial years of this disease. I felt abnormal, angry, upset and different. I asked “why me?” like I was the only person in the whole world with any obstacles. The diagnosis was a genuine grieving process for myself and what I interpreted as a loss of my old life. This was in a pre-Facebook, pre-blogging world, and I felt alone. Did it help that I was a hormonal teenager? I doubt it, but I don’t know it would have been better if I were diagnosed today. After 14 years I am still navigating my way through this disease and as I sit here writing I’m thinking, it’s time to take my medicine.

woman hiking a mountain with her husband and dog

Yesterday I had a follow-up appointment with my “rheumie” (rheumatologist) and he told me that numerically, I’m doing great. I’m sure when he sees my name come up as a patient he braces for impact because I come prepared with a slew of questions.

Do you think birth control is a safe option for me?

Is this rash lupus-related?

What can we do about this fatigue?

How much coffee is too much coffee?

Running or pilates?

Is hot yoga safe for me?

He said, “Talia. You can do anything. Live your life. Wear sunblock. Seriously, go put on your sunblock.”

Originally published: August 7, 2017
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