My story:

At age 11 I had an issue with my eye. They diagnosed juvenile rheumatoid arthritis. We went about our lives and that was that.

I hit puberty and things were ok…then in my early 20s i started to feel sickly, sore and tired. I had a child young so i chalked it up to that and working a lot. Finally at about 28 things got really bad…i went to my doctor and she sent me for tests. Found out i had 3 blood clotting disorders, my ANA was positive but low so I was only diagnosed with fibromyalgia. I was put on a bunch of medications. I pushed further….I made an appointment with a specialist at “undisclosed University” and to my surprise, they agreed with my diagnosis. So i continued living, knowing deep down there was more and scared that something really bad would happen before they figured it out. Also, I had recurrent pregnancy loss. From miscarriages to abrupted placentas, all 3 trimesters. I lost a total of 11 babies and I was able to have 2, 11yrs apart, due to the losses. When I entered my 30s, things were getting progressively worse, i again went to my pcp, brought up my concern and was repeatedly told “its just the fibro”. It was 6 yrs of hard pushing for answers, appointment after appointment, denied disability 3 times, lots of heartache all around. Money was tight, I was exhausted so i gave up again. And for 2 years went back to work and pushed through everything.

Finally….what I knew to be true, for many years, was. I had mixed feelings, I didn’t want to have a disease yet i didn’t want to continue life not knowing. So in a sense the diagnosis was a relief. May 30th, 2016- I was at work and I went outside on my break. I walked down a small incline and hit a divet and fell. I sprained my ankle in 3 places and i was out of work. My ankle wouldn’t heal, the swelling, the pain….it just stayed the same for months. I had also started to lose so much more hair, forgetting words, sleeping whenever I was not working….things were spiraling. One day in June I was camping. I didn’t like the sun and the way it made me feel, but i decided to lay in it for a few minutes to try to get a little color. I was in direct sunlight for about 10-15 mins. After, we packed the car and started the 2 hr drive home. Not long after we were in the car, i noticed a weird rash on both my arms….spreading rapidly and within hours, my arms, chest, face, neck, behind my ears and my hairline were covered in a weird non-itchy rash. I had an inkling what it was but didnt want to self diagnose. So after about 3 days with the rash, i went to my pcp. When she walked in, she took one look at it and said, THIS is the lupus rash, THIS is what we’ve been waiting for. So she sent me to the dermatologist asap for a biopsy and she drew blood for the other tests. Within a week and half of that day in the sun, I had a positive skin biopsy, a high ANA, high sed rate, high cpr, high ssb and dangerously low vitamin d and platelets. I brought it to the rheumatologist, and 2 weeks to the day, i was diagnosed with SLE (Systemic Lupus) and sjogrens.

I fought for years only to have 2 weeks of being in my first big flare and get a diagnosis. The flare lasted all summer. I was out of work for 7 months. Sores came on my mouth, hives appeared from head to toe (i wanted to die during that!), my hair was falling out in chunks, my memory gone, my body sore, my sleep non-existant. After about 7 months and getting on the right medications, I finally came out of it. I have had mild flares here and there and still live with symptoms daily, as I will for the rest of my life….but right now I’m functioning much better. My oxygen runs lower than it used to, my temperature is higher. Through medications I got my platelet count and vitamin d up to a normal range. I’m still learning how to live with it….be a mom, a wife, a friend, a daughter, an employee….all while feeling like i want to fall apart 90% of the time. But I’m getting there!

If doctors had not blown off my low ANA, my pain, my “invisible” stuff, for all those years, I maybe could have avoided that first flare that took my quality of life away for 7 months. I dont feel like they listen…even now. I despise going to my rheumatologist. I avoid it if I can becuase even he makes me think it’s in my head!

I hope your research and stories like this bring to light “invisible” illnesses. Becuase to me, i see it daily and the rest of the world should too.