When I was diagnosed with a progressive incurable chronic illness which currently has no FDA approved treatment… one of the first things I was afraid of was becoming isolated and loosing my social connections. Sadly, 16 years into the illness now I find myself more isolated than ever… most of my friends have left my life, people often don’t continue to invite you to include you in activities when you have to cancel 8/10 times… and most people are not willing to come over to your house and just do simple quiet activities that your illness allows for. If you are blessed with the rare friends & family members who have stuck with you - count your blessings because we do not all have this in our lives.
Also because many with chronic illness became disabled when they were young they do not have the financial means to be able to live in any type of community/facility setting… there are often age restrictions for only people older… or some like myself have such significant special dietary needs, chemical sensitivities, and sensory issues that being anywhere but home is nearly impossible.
When children are home-bound by illness there are thankfully many wonderful programs for in-home education and in-home enrichment activities… sadly these benefits all end by age 18… but unfortunately home-bound life continues for thousands of young adults beyond 18.
If this is you… hold on fellow warrior hope is out there, and know that while you may be physically isolated, your situation is NOT an isolated event there are thousands of us out here and we are all connected in our desire and need for connection and inclusion. Keep using your voice wherever you can and asking for help whenever and where ever you can get it!
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