Thursday, September 13, 2018

"hold on to me, i'm a little unsteady"

I have never shied away from being open and vulnerable about my life. I have written about my battles with anxiety, depression, and postpartum depression. I have always felt that being open and honest about talking about these things is what we need as a society. So, why, when I’m diagnosed with a long-term, chronic autoimmune disorder do I not want to talk about it?

I’ve had the conversation with some of my family and a few of my friends. It’s awkward to bring up and no one knows what it is or how to react. They all get this look of confusion, pity, and fear on their faces. Mixed Connective Tissue Disease. Yeah, I had no idea what it was either until my diagnosis and, to be honest, it’s still a little confusing to me. 

I was showing some signs and symptoms of lupus and rheumatoid arthritis so my primary care physician ordered some blood work. Two positive ANA tests later and they referred me to a rheumatologist. The rheumatologist then ordered what seemed like an amount of blood work that could satiate Dracula’s appetite. I got a call the following Monday: Mixed Connective Tissue Disease (MCTD)

While it’s great to have some answers as to why I’ve been feeling so miserable, it really just leaves me with more questions.  I’m home today from work. I woke up with a migraine and then slept for 5 hours and I’m still exhausted. I have been in pretty consistent pain (joint and muscular) for the last few months, the last few weeks being significantly worse. I have good days and bad days and I pretty much have no idea when I go to sleep what I’m going to wake up feeling like the next day.  I don’t know exactly what MCTD means for my day-to-day life or my overall life plans. I have a dissertation to finish, a job that I love and I want to have another baby. We have an appointment with the rheumatologist on Monday to go over a treatment plan and get more information. My husband is going with me. We’re going to ask all the questions and move on from there. 

This is so much easier for me to write about than talk about (other than the fact that it hurts to type). I don’t really want to talk about it but I do know I’m going to need the love and support of my friends and family as I go through this.  It’s also something that’s been racing through my brain quite a bit of the time since my diagnosis. 

So, if you’re like me and know you need to get it out but would rather avoid having the awkward conversation a million times, I’ve created this template for text/blog/email:
Dear __________,
I have recently been diagnosed with _____________. I’m having a hard time talking about it, but I’m really going to need your love and support as I go through this journey. ________________ is  (insert type of disease and some additional information. I might be feeling ______________ but you might never know it. Every day is different and I really appreciate you being there for me. 

I’m sending you all of my love and support. We all need it. Don’t forget that you don’t have to go through this alone. If you don’t feel like talking to friends/family, there are online support groups for just about everything.