Ask the Experts: What was Your First Reaction When you Were Diagnosed?

Our Experts helped us paint a picture of what their first reaction was when they heard about their diagnosis. Here some of their answers:

Kelly Mack

I actually do not remember when I was diagnosed because I was just two years old. I remember as a small child being confused because I knew I had an illness and was different from other children. My parents were great at explaining what RA was and how it was attacking my joints. I understood at an early age that I had an autoimmune condition, that my immune system was attacking my bones. We had discussions about not knowing how it would impact my health and how important it was to take my medications, do my exercises, and keep up with treatments. I was always very involved in my health, from knowing my medications and dosages to understanding my blood tests. While a lot of fear came from the uncertainty of my health and periodic flare-ups, I also felt empowered as much as possible for my self-care.

Monica Sengupta

Relief. It was nice to know there was something behind all the nasty symptoms I was experiencing. I wondered why I was so tired and painful. I assumed I was unhappy or bored but it turned out the symptoms were not in my head!

Leanne Donaldson

Honestly, when I first heart my “official” diagnosis, I was relieved. I know it sounds strange, but I had spent nearly a year searching for answers. I had so many tests, doctor appointments, and second opinions that I was beginning to doubt my own sanity. I was so relieved to at least have an answer that I didn’t really have a lot of extra energy to be angry or upset.

What was your reaction when you were diagnosed? Feel free to comment below or join the discussion on our Q&A.

Comments

View Comments (7)
  • pattieh
    10 months ago

    I had a big sigh of relief it wasn’t MS. It’s only been 6 months so it still isn’t under control. Worse than the pain is the fear. I work in health care so almost daily I see The worst of it, it isn’t comforting.

  • RHPass
    10 months ago

    I remember clearly saying to the doctor “Thank God it isn’t Lupus”. My gandmother had RA AND Lupus and suffered so….The doctor said it was the first time he’d heard anyone grateful it was RA….well, sort of!

  • Monica Y. Sengupta moderator
    10 months ago

    RH Pass, thank you for sharing! My mother had Lupus (I have RA) and I frequently find myself saying “…at least I don’t have Lupus”. My RA has been pretty well contained, which I am thankful about, so I definitely understand the sentiment! ~Monica (Rheumatoid Arthritis.net Team)

  • rockcandi
    10 months ago

    I was definitely relieved. Although I’d been diagnosed the first time as a small child, I’d had to start all over in my early 20s. I’d been having symptoms my whole life but it wasn’t until I was 17 and out of my parents home that my pain was becoming debilitating again. I had a very uncaring doctor at the community clinic and with no insurance he was my only choice. So I went to the ER every time I couldn’t walk bc of severe pain in my hips, feet, or heels. It got to the point that they knew me and would automatically give me an anti-inflammatory shot and muscle relaxant shot when it was in my hip(s) and sometimes a steroid shot. The 2 main ER docs I frequently saw believed I had either MS or Lupus, even though I told them I had JRA starting at age 6. I do have Lupus but when my main dxd was JRA at the age of 30, I was relieved to finally know and be able to treat it, and bc I was terrified of having MS. I also felt extreme gratitude toward my primary care doc who was fairly new at the community clinic. The very first time she saw me she told he was 100% sure based on all of my symptoms (I’d had to check basically every possible symptom on the whole page!) that I had an autoimmune disease and she got blood work done immediately. When my ANA was positive, among other for sure indicators, she sent me to a rheumy at one of the most popular colleges in the Big 10, that I’m thankful to live only an hour away from. My rheumatologist was very caring and amazing. Very thankful to her too! (Sorry to be so long-winded!)

  • Lawrence 'rick' Phillips
    11 months ago

    I had a great cry. Sheryl and I went to the car, had a terrifically satisfying cry, and vowed we would make it though. Then we went to work.

  • pattieh
    10 months ago

    I still need to have that good cry!

  • Alesandra Bevilacqua moderator
    10 months ago

    Hey pattieh and thanks for sharing. I hear you – sometimes a good cry can be therapeutic! Warmly, Alesandra (RheumatoidArthritis.net Team)

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