I’ve never considered myself a very religious person. I believe in God, I was raised Catholic, and spent 13 years attending Catholic schools, but I’ve never really been one for organised religion. But I’ve noticed that since I started getting sick over the last few years, I find myself saying a quiet prayer when I have a quiet moment, often in the middle of the night, when I wake up feeling scared and alone and like my body is both crumbling apart and walling me in.
I’m blessed with an amazing support system, I live at home with my mum and my sister, and have a close extended family. I have an incredibly supportive boyfriend, and beautiful friends, two in particular who are more like my big brother and little sister. These people all make up my Chosen Family.
But sometimes, I don’t feel like I can ask for help. Sometimes, I don’t want to be a burden. Sometimes I know that if I speak up, they’ll worry when there’s nothing they can do. Sometimes I desperately want to be able to do things on my own because I’m still trying to cling to as much of my old life as possible, because otherwise I’d just give up. This is when I’ve found myself turning to God, and whispering a quick prayer.
I try not to ask for too much, because I feel selfish. First, I pray for my Nonno, who I know is watching over me from heaven, and I pray that he is proud of me. Then I pray for my Nonna, who is so sick that her illness has become the living embodiment of everything I fear. I say a prayer for all of my Chosen Family, especially my mum, who bears the weight of the world on her shoulders, and right now, my brother, who has such a beautiful soul, and I wish the world was kinder. And then, in the dark, when I have nowhere else to turn, I say a quick prayer for myself. I tell God that I’m scared, and that I need everything to be okay. I ask for strength, because truth be told, I’m terrified. I’m terrified of getting sicker. I’m terrified of ending up like my grandparents, trapped in a body that I can no longer control, or in a mind that’s no longer my own. I’m terrified of losing the people I love.
I ask that he can help me be brave, so that I can get through the night, because it will get better. The sun will still come up in the morning. My mum will come and nag me out of bed, and I love her for it because without it I might not find the strength to get up. We get the train together, where I get to go to a job that I love. On the way home I message my friends, and our conversations range from the brutally raw to nonsensical hilarity. In the evening, I curl up in some soft pyjamas and a fluffy blanket, and I talk to my boyfriend. Sometimes he helps me with my uni, when for one reason or another my illness has caused me to leave an assignment until the last minute, but most of the time we just talk. And then, on my good days, I fall asleep with some soft lighting and a warm duvet, and the sun rises again the next day.
Yes, now my days are a bit different. Sometimes I have days when I can’t even get out of bed. Sometimes I have to stop doing the things that I love, and find another focus that is something more doable for my body. Sometimes my days are filled with doctors and pills, procedures and hospitals, and sometimes they tell me things that I don’t want to hear, but sometimes they do.
Last night was a bad night. So was the night before, and in the small hours of the morning, I said a quiet, wordless prayer. And today, today was a good day.
Today, I finally got answers. I added another doctor to my amazingly supportive care team, this time, a rheumatologist. Today, after years of presumptive diagnoses, and having my symptoms minimised or told I was misinterpreting them, I not only learned how to self-advocate as a patient, but I met a doctor who was willing to listen.
Today, on Friday the 15th of June, I was diagnosed with fibromyalgia, and Ehlers-Danlos Syndrome, Hypermobility Type. Today is a day that I will always remember, because its the day that I can stop worrying about what if, and start looking forwards to what next.