What about breaking the news to your family members? What about those who don't seem to understand and make it 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 Doctor's 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 us.
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 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 its not what we hoped for, we don't know how our story will end.....but nowhere in my text will it ever read I gave up.
-Blount's Disease Strong