How I'm Learning to Trust My Journey With Rare Disease

Let’s admit. We have all had days when something goes bad at work or not as expected and we feel overwhelmed and emotionally drained. But what about that moment when you receive an unexpected diagnosis? So many emotions fill your head, so many thoughts and unanswered questions come into effect and all you want is information on how the condition will affect you in the future. You want answers to what treatments are available. You spend countless hours behind the computer searching the internet for research, only to find there is a lack of information on your diagnosis being that it is rare and there is no supporting organization. You join support groups on social media only to realize we are all in the group for the same mission…awareness and answers.

woman standing under a tree

What about breaking the news to your family members? What about those who don’t seem to understand and make it feel as though you did something to cause this? Or those family members who are stuck in the older generations where they believe people today are diagnosed for every little thing? The times you have to fight with insurance companies and doctors for approval on certain situations you feel would benefit your condition? Rare is real. Being diagnosed with a rare condition affects not only you, but those closest to you.


Let’s not forget to mention all the time needed to be taken off work/school for specialty visits, testing and surgeries. The medical bills that pile up from medications and hospital visits that leave you in a financial hardship because this wasn’t something you planned for. What about the mental effects from having a diagnosis that can lead to anxiety and depression…even thoughts of suicide? Rare is real. Even if we don’t understand it, we must learn to trust the journey. Unexpected things happen along the journey and although it’s not what I hoped for and I don’t know how my story will end…nowhere in my text will it ever read I gave up.

I am Blount’s disease strong.

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