Finally

I don't let this disease define me. I respect it. I acknowledge it. I am actually proud at times knowing it tried to break me, but hasn't.  And it won't.  2 min


16
2 comments, 16 points

Confusion. Shock. Desperation.  Defeat.  Acceptance.  Determination.  Hope. Diagnosis. Dermatomyositis.

This was my path to diagnosis, which took what seemed like 4 of the LONGEST years of my life. As I sit here and really take the time to evaluate my emotions and feelings of my diagnosis, it really makes me realize that I have never felt actual  ANGER towards this disease,  but only a deep frustration and disappointment that it took oh so much fighting on my behalf to be heard.

I know I’m not the only one out there that felt like they were pacified. That they were overlooked.  That they were hurried along. That they were given the most convenient answer. That they were feeling so alone in the fight to figure out WHY they were feeling the things they felt and seeing the changes in their body. I know there are probably so many of us that could link arms and say, “Yes. Me too.”

I know that this is a rare disease. I had never before heard of it so I can’t blame anyone for not knowing the same thing I didn’t know. But then again, you go to healthcare professionals because they are the ones that are supposed to immediately listen to your symptoms and look you over and then proudly pull the proverbial rabbit out the hat and present you with that long awaited answer. But after 4 years of no rabbit, you tend to get a little disgruntled.

That’s when I decided to really dig my heels in and start TELLING, not asking. THIS is what we are going to do. No. I’m not going to smile and say ok when inside I am screaming NO. This doesn’t sound good. No, I refuse to have you walk in and glance briefly at me then scribble another useless topical….an antibiotic….or rest (insert the biggest eye roll of life here). Tap my arms and legs and say “looks good!”   Tell me that I need to just avoid fragrances and dyes and it should all clear up. Sigh….I’m done trying to put a bandage on something that is brewing clearly from within. I may be a mystery but I deserve to have a final chapter in this journey.

Myositis patients, donate plasma

I come from a small town in Michigan…Mt. Pleasant….literally the word pleasant and I always tried to be just that. Pleasant. No more. I learned where my backbone was and it was much bigger than I realized. Finally, I learned that you are truly your own best advocate.  Thank god for my husband who supported me faithfully and fiercely in all of this. He never let me give up.

So here I am, finally. I’m happy. I’m actually thrilled. I have Dermatomyositis.  Who says they are thrilled about having a rare autoimmune disease?  This girl right here.

I don’t let this disease define me. I respect it. I acknowledge it. I am actually proud at times knowing it tried to break me, but hasn’t.  And it won’t.  It can try, and I will push right back every step of the way.

I am thrilled to have an answer. I’m thrilled to be meeting others that share this brotherhood and sisterhood that link us, total strangers. But man. Isn’t it amazing to connect immediately with someone and feel that (to me) mind blowing excitement when they describe exactly what you have lived? That someone you have never met before understands more of this piece of your life than some of your closest friends?

I don’t let this disease define me. I respect it. I acknowledge it. I am actually proud at times knowing it tried to break me, but hasn’t.  And it won’t.  It can try, and I will push right back every step of the way. But I know it will always be a part of me. And that’s ok. It is a small part of my identity now and I’m going to use it as a platform to help someone else navigate their own:

Confusion. Shock. Desperation.  Defeat. Acceptance. Determination. Hope. Diagnosis. Dermatomyositis.

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Emily Finke

I'm a teacher and mom of 2 adorable little boys, 1 big fur baby and a wonderful husband. My Dermatomyositis actually presented itself when I first found out I was pregnant in 2015. I was finally diagnosed in February 2019 after years of being written off.  Michigander now living in Florida.

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  1. Emily, your first line, “Confusion. Shock. Desperation. Defeat. Acceptance. Determination. Hope. Diagnosis. Dermatomyositis” really sums it up for so many of us. What a great piece. I look forward to reading many more of your posts!

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