High Schooler Spreads Awareness by Sharing Her Rare Disease Story

I’m Celeste, and I’m sharing my story because too many ill people go undiagnosed and too many healthy people know nothing of it.

Being chronically ill is like (for lack of a less cliche phrase) riding a never-ending rollercoaster with a blindfold on. I hopped on this rollercoaster unwillingly and unknowingly on August 21 of 2014, when I was an eighth grade student. I’d had a minor cold just before then, and I had also just received my second HPV vaccine (not to mention the tick bite with a ring around it that I’d gotten 15 months prior). Who’s to say what, if any of these, brought on my symptoms?

Speaking of symptoms, they included nausea, fatigue, loss of appetite, constipation, and tachycardia. In the years since I first became sick, it has all gotten much more complicated. Things like colds (which are frequent), my period, heat, certain foods, and overexertion can exacerbate my symptoms. More recently, major symptoms have been nausea (still), brain fog, and weight gain. Lots of trial and error has led me to the medications that treat some of my symptoms.

Let’s talk about diagnoses! Currently, the most prevalent ones are POTS, PCOS, EDS, and MCAS. What a load of acronyms, right? POTS (postural orthostatic tachycardia syndrome) was my first diagnosis, having had the tilt table test in February of 2015. I am extremely grateful to have been diagnosed so quickly (no thanks to my main doctors at the time). I got in with an amazing specialist who has helped treat my symptoms with great empathy and immense knowledge. EDS stands for Ehlers-Danlos Syndrome, and it’s a genetic disorder involving the body’s collagen. My joints are like those of an 80 year old, my skin is sensitive and fragile, and I am a little more flexible than I should be. These are just a few of the effects of EDS.

MCAS (mast cell activation syndrome) is a fairly new diagnosis for me; I received it in December of 2017. It also affects many of the body’s systems, and symptoms can be treated with antihistamines and other medications. These three diseases my GI specialist likes to call the “evil triplets” and they are dubbed similarly all over the medical community. If you have one, it’s likely that you also have the other two.

PCOS [polycystic ovary syndrome], my other main diagnosis at this time, has come in the past year or so. My OB/GYN thinks the excruciating pain I have experienced occasionally in my pelvic area is ovarian cysts rupturing. I have also had significant weight gain over the past couple years that hasn’t been helped by diet or exercise (I was already eating much less than I should have because I had no appetite). I am in the process of finding a way to treat it that works for me.

There is always uncertainty when dealing with chronic illness. Just when I get one thing under control, another pops out that I need to identify and treat. As a high school student, I have had a difficult time managing my education. I have had to find new things to aspire to, and I am still trying to accept the fact that I have no idea how the rest of my life as a student will play out. Flare-ups happen frequently and suddenly and last for months at a time, causing me to miss an amount of school that is detrimental to my graduation and future (hopefully) at college. Ultimately, all I can do is take things one step at a time.

My story isn’t an inspirational one, and it doesn’t have an ending, but by sharing it I hope to spread the awareness that is so necessary for those of us with chronic illnesses. Ignorance hurts. From friends and family it causes emotional struggle, and from doctors it can lead to years without a proper diagnosis, being written off as anxious or a hypochondriac. Education is key, and to inform people, all we need is a voice and somebody to listen.

To learn more about dysautonomia, check out our partners the Dysautonomia Advocacy Foundation.

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