It’s been an arduous journey losing my health and being replaced with a person, who physically, I don’t recognize. The time, energy, and self advocating it took to get my Ehlers Danlos Syndrome and Craniocervical instability diagnosis was exhausting, frightening, and more difficult than it should ever have been. The years of being told it was #Anxiety or psychosomatic took such a mental toll, but I knew better and I persevered. I have some wonderful family and friends and without their love and support, I could have never made it this far, yet still something was missing.
After suffering a spontaneous #VertebralArteryDissection in 2010 I joined an online support group. It helped me to understand what had happened to me. As time has went by, with each new diagnosis came more and more support groups. Then came the relationships I never saw coming! #ChronicPain and illnesses are so isolating and even when we have supportive families and friends, that is often not enough. Though we wouldn’t wish this pain or these conditions on anyone, we yearn for people who understand, who can truly empathize, who won’t judge. It took some time, but I found the family I didn’t even know I had! The relationships with people, most of whom I’ve never even physically met, is amazing! We cry, vent, joke, share, and most importantly we love and understand one another. We swap numbers and chat on the phone like lifelong friends. We pray for one another when facing fears and crisis. We send and receive unexpected cards, gifts, and flowers. We share our stories and help others just beginning their frightening journeys in hopes we can save them some of the difficulties of getting diagnosed and receiving the appropriate treatments. We’ve seen the struggles of friends who are fighting suicidal thoughts and we rally around them to let them know this world needs them, that they matter and that we will help to carry their burdens and pain when they feel they can’t go on. I’ve witnessed lives saved by seemingly virtual strangers, but we are not strangers at all. We’ve lost friends to these illnesses and we come together in our #Grief to love, support, and heal. We are brothers and sisters born and brought together through sickness and pain and we have a level of empathy and love that can’t be matched. I shudder to think of all who suffered before social media. Those who were never able to find that level of love and support. Those who were labeled crazy and maybe even institutionalized. Worse yet, those who didn’t have the love, support, and understanding to go on. This is a frightening and lonely road, but I stress to anyone dealing with any #ChronicIllness and pain. Don’t ever give up! You’re family is out there and they will welcome you with open arms! I live in a never ending cycle of grief, mourning my former healthy and vibrant self, I believe we all do, but with the family I’ve found in the virtual world, I wouldn’t change a thing! They are my tribe and they have been one of the biggest blessings in the storms!
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