This week, I’ll be participating in RA Blog Week. Today’s prompt:
Tell us about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?
I was so young when diagnosed with my Systemic Juvenile Arthritis (SJIA) that some of the fun details aren’t always things I remember.
I was five when I got sick. I remember feeling incredibly sick. I went from being happy and bubbly to tired and fatigued. I ached all the time. Sometimes it hurt to walk or to move my hands. I had rash all over and it itched something fierce. I could barely get any sleep and, when I did, it wasn’t restorative; I kept scratching my rash and trying to get relief in my aching joints.
All I knew was that something wasn’t right. I was still forming my ideas of normal and not-normal, but I figured that this wasn’t right.
Then came doctor appointment after doctor appointment… and misdiagnosis after misdiagnosis.
The last misdiagnosis was leukemia and I was given weeks to live shortly before my sixth birthday. I was incredibly ill.
Frankly, I think that I was going through Macrophage Activation Syndrome (MAS) as many with SJIA do during the initial disease onset phase. MAS can be deadly and, to be honest, I’m incredibly lucky to be alive.
Shortly after my sixth birthday, SJIA was found as the culprit. It was a relief to know I didn’t have leukemia BUT it was scary to have a rare disease that even my doctors didn’t know about.
Shortly thereafter, I was medically neglected by my mother and wound up not getting treatment, aside from over-the-counter Aleve, from ages 7 to 21.
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| I was 8ish here and sis was 4ish |
At one point, I just assumed that all kids went through pain, that I was just weak and couldn’t handle it. After all, mother made a point of talking about how she went through similar as a child. Who knows if she was telling the truth in the end, as she’s a pathological liar, but it didn’t help how I processed things.
When I was diagnosed, the idea was that SJIA kiddos would be in a wheelchair by age eight. I was incredibly scared about it. I thought, because no one had talked to me in an adult way about it, that I was going to wake up on my eighth birthday and magically need a wheelchair. My legs would just stop working.
Thus began my lifelong battle with anxiety, too.
What’s your origin story?