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Reflecting on Life
Having a rare disease brings about so many thoughts and emotions, including depression and anxiety. My rare disease involves a progressive neuromuscular disorder with symptoms that present as an combined overlapping of ALS, complex hereditary spastic paraplegia, spinalcerebellar ataxia, and MS. They have yet to figure out exactly what it is, but while the answer is still out which rare disease I am living with that impacts every part of my body that is still actively there everyday mixing in with my autism and autoimmune disorder. It has made me wonder bout so much, including but not limited to - how to gain and keep a career, what it would mean to go on disability, how to be sexually intimate, how to be active, how to maintain and grow my independence, how to pursue my passions, and most recently with enter the journey of fatherhood - how I will navigate that. So much time and energy goes into managing, preparing, adapting, hoping, struggling, and adapting, adapting, and more adapting. All this while there are so many successes, joys, milestones, blessings and more in the unknown at the same time of the fear, anxiety, pain and challenges. And even though I have differing abilities and life may look different in many ways, it doesn't make me any less capable or less than anyone else. I have found connecting and learning from others helps along this journey as well as sharing.
So I ask how do you adapt things in life?
What are your joys and successes?
What are your fears and challenges?
What are your hopes and dreams?
How does a rare disease or differing abilities impact your life?
#Autism #RareDisease #RheumatoidArthritis #Disability #MentalHealth #MightyTogether #CheckInWithMe
