Waiting For a Diagnosis

My tongue will tell the anger of my heart, or else my heart concealing it will break.

William Shakespeare

4 years ago around this time I started experiencing my first symptoms. I’ve never written about that time in between the start of my symptoms and my diagnosis. It was a hard time. Really, really hard. Back then I didn’t realize I’d soon be referring to my life in before and after terms. Before I got sick, after I got sick. Nobody talks about how hard the waiting period is. I wish I had known. It’s like you’re waiting for your whole life to change. You know that it’s going to happen, but not necessarily how. I cried a lot during that time. I was in a car accident in March 2017, started having symptoms in April 2017, got my first set of bloodwork done in late May 2017, found out about my titers for Lupus in June 2017, was diagnosed with Lupus in July 2017, and then I was diagnosed with CREST in October 2017. A lot can happen in a few short months. Those few weeks before my Lupus diagnosis were so scary. I had no idea what the outcome was going to be. I had to wait a month to get into my rheumatologist. I really think I cried every single day. Plus I was in so much joint paint, I was running fevers, and I was extremely fatigued. Add my anxiety and sadness onto that and you get a very depressing couple of weeks. It’s funny the small things that I remember around that time. The Penguins had just won their back to back Stanley Cup a few days before I got my blood work back. I remember leaving the radio station after talking about their win on the sports show, coming home, and sitting down with my mom on the couch where she told me about the Lupus titers in my blood tests. The very next day, I went to an engagement party. I look back at those pictures and just see a girl who was faking being happy, because that girl was so scared, and so confused behind that smile. I was very thankful for my family that day. I felt all of their love & support and looking back, that was just the beginning of them standing behind me no matter what. My sister graduated middle school a few days after that, and we had a party for her. I remember sitting at the table talking to some family members about how I finally got an appointment with a rheumatologist. I look back at those pictures and I know that I was happy. That was the first time I realized that I could be scared & mad but also be so happy & so grateful. That’s the only reason I’ve made it this far. I was able to balance out those bad feelings with the good ones. Waiting for the CREST diagnosis was a different kind of hard. I was diagnosed a month after figuring certain symptoms out. So, it really wasn’t that long of a wait. Plus, I figured I already had one autoimmune disease, what’s one more? The hard part was waiting to find out if it was CREST which is also known as limited scleroderma, or systemic scleroderma. There’s one big difference, systemic scleroderma can be fatal. Waiting to find out about my test results was excruciating. That’s the best way I can put it. In 55% of people diagnosed with systemic scleroderma, there’s a 5-10 year lifespan postdiagnosis. I was terrified. I tried to stay positive and out of my head, but it’s not always possible. The bottom line is, I was afraid this would kill me. I only had to wait about a week for those results, but it felt like a lifetime. Of course, I was diagnosed with CREST instead of systemic scleroderma. And I’m thankful for that every single day. I’ve said this before, but I find it funny what I consider myself lucky for these days. I never thought that I would feel lucky for being diagnosed with a chronic illness. But here I am. And I will proudly say that I’m lucky for my diagnosis, doctors, treatment and support. I think I owe it to all of the people who never got their diagnosis, or the people who are still waiting. I hope that one day they’ll feel lucky too. In January 2019 I was diagnosed with major depressive disorder. It sounds silly, but I hoped for that diagnosis. I was in such a bad place, and I just wanted to know that I wasn’t crazy, and that what I was feeling was real. In most cases, diagnosis = treatment. And I needed it. I struggled less with waiting for a mental illness diagnosis than a chronic illness one. I don’t know why, I guess that’s just how it was. My health (both mental & physical) has been pretty stable for 2 years now. Another thing I’m thankful for. Looking back, that waiting period was the hardest thing I’ve dealt with, but it brought me to where I am today. Knowing that I survived that, makes me feel like I can survive anything. It makes me feel so, so strong. If anyone reading this is waiting for a diagnosis, I see you, I hear you, I feel you. And you are so incredible and so strong. I promise you that you will get through this, even if it doesn’t feel like it now. If anyone reading this has gone through the waiting period before diagnosis, know how much strength and courage it took to get through it. You should be so proud of yourself. Life is not easy, and it can change in an instant. Just live everyday bravely and boldly, because we don’t know what tomorrow can bring. I recently read It Ends With Us by Colleen Hoover. It was so amazing, and I very highly recommend it. I’ll leave with a quote from it. “I think about how sometimes, no matter how convinced you are that your life will turn out a certain way, all that certainty can be washed away with a simple change in tide.”

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