Feeling alone is one of the most painful parts of living with a chronic illness… especially a rare chronic illness as a young/younger person. When we look at our lives compared to those we have around us, others at our place of employment, or place of education, former highschool/college peers, friends and family members who are healthy and living “normal” thriving lives… it is so easy to feel like we are the only ones on the planet facing the challenges we are facing.
Thankfully the internet and social media has GREATLY changed this face of isolation for those of us facing challenging health conditions or disabilities. One of the best things I have ever done for my life was to come into full acceptance of the disease I am facing, and slowly start building my online community. How?… firstly, by posting to my own personal facebook and Instagram accounts and sharing my life, my journey with this illness… the ups and the downs… sharing ME and my story! I also reached joined a facebook group for others faced with my condition #mitochondrialdisease. I found a national non profit organization aimed at supporting those with my condition @mitoaction, and I joined the weekly zoom support group calls and I shared to both seek advice, as well as offer it to my fellow mito warriors who are fighting along side me in spirit each day. I now am also slowly stepping into a more active advocacy role as I have a small involvement in some volunteer work for the mitoaction organization and I am learning more about advocating for myself and others with rare diseases in the legislative space.
When I felt most alone and isolated, it was because I was not stepping forward into the light and being real and truthful about my struggles and looking to truly connect to others. Making the choice to step forward, put myself out there and connect probably saved my life! I hope you can find the strength to do the same!
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