Today is Rare Disease Day

Today is Rare Disease Day.

There are no cards for this day. No section in the Hallmark store.

I’m often surprised at my social media feed on February 28. People I didn’t realize had been affected by a rare disease share their story, or the story of a loved one. Perhaps the purpose is to be seen, to have the struggle witnessed, to bring light to something not often discussed. Perhaps it is to raise awareness and financial support for research. Whatever the reason, some people find some sort of meaning, solace, or purpose in sharing a story that is not understood by many.

I’m one of those people.

This year, as February 28 approached, I didn’t think much of it. If I’m honest, in part I felt like I couldn’t - or, rather, shouldn’t - identify with this day as closely as I had in the past, as I’m now over four years in remission from my rare disease - immune thrombocytopenia purpura (ITP). ITP is a rare autoimmune condition in which the body attacks the platelets. I received the diagnosis in 2019, when my son was 11 weeks old. If I may, the timing was particularly cruel, as I was mere days from having been medicated for severe postpartum anxiety, just barely beginning to see the light. The ITP diagnosis rounded the corner like the Joker, mocking my naiveté. It was accompanied by a dose of steroids so hefty the outpatient pharmacist wouldn’t fill the prescription at first, as he thought it was a mistake. This sent my mental health into another tailspin and added to the medical trauma from which I was so diligently working on to heal. The first round of steroids helped get my platelet count high enough for me to leave the hospital, but nowhere near normal. A few days after discharge, they tanked again, as evidenced by a return of dozens of unexplained bruises and my mouth filled with blood blisters. This led to a more long-term dose that guided me into remission, where I have nervously and thankfully remained since. Said remission could be lifelong, or it could end abruptly at any moment - a knowledge I have wrestled into a reminder to stay firmly rooted in the moment.

For the most part, ITP stays in the backseat of life, becoming visible in the rearview mirror only when I’m very stressed or sick, as sometimes those are triggers for relapse. There are times, however, that it jumps to the front seat, an unwelcome passenger I wish I could wrestle out the window.

ITP is the reason I can’t try to get pregnant again - or at least shouldn’t.

For awhile after our son was born, I couldn’t imagine the thought of enduring postpartum again, even without an autoimmune diagnosis thrown in the middle. The hopelessness I felt from the depths of postpartum depression and anxiety engulfed me, and I had no desire to climb back down into that hole. Time causes amnesia, however, and the sharpness of those memories dulled a bit over the years. There came a time when my desire for another child overpowered my fears, and I was willing to walk the path near that hole again, this time armed with more tools and knowledge with how to climb out if I found myself there again. However, every time my mind started to wander, I would butt up against the cold, metallic reality that being pregnant again wasn’t in mine or my family’s best interest - it’s very likely that my ITP was triggered by the cocktail of hormones, stress, and physical changes of pregnancy/postpartum. While many women with ITP do get pregnant, it’s considered high-risk; also, for me personally, when my platelets drop, they don’t just drop a bit - they drop to a scary, dangerous low. I know, deep in my soul, it’s not the path we are to take.

And yet, sometimes I keep returning to that reality, on my knees and weeping in front of that closed door.

Sometimes illness takes more than it touches.

It’s a complicated reality to feel forsaken by one’s body. My body is simultaneously causing me pain and giving me life. My heart that beats to send oxygen to my limbs is also hurting; the blood that fills me also betrayed me. It both heals and harms, groans and grows, gives and takes away. I’m both deeply thankful for it and at times intensely angry. Most of the time, I feel profound gratitude for remission, and yet there are moments I find myself back at that steel door, grieving that it happened at all.

I’ve learned, or perhaps I’m learning, to let emotions come and go without judgement, without needing to tidy up the ones with uneven edges. So, when reminders like February 28 come, I brace myself for the waves and don’t run for dry land. They mess up my hair and get sand all over, but they are part of the human experience and have their own lessons to teach. I’m learning it’s okay to hold pain in one hand and joy in the other. I’m learning there’s no criteria to earn the right to grieve, and the relief of remission doesn’t erase the bruises of secondary infertility. I can deeply appreciate the child I have and also return to that door from time to time. I pray that my visits will lessen over time, but am also giving myself advanced permission to return there as I need throughout the future.

May you grant yourself the same.