Ongoing illness is isolating

In the past 4 years I have learned that a chronic health issue is consuming in ways that can trump connection with friends and family. Friends that I have had for years don't pick up the phone to call to see how things are going in relation to the shoulder instability, doctor appointments, and run arounds. Loved ones don't quite know what to say.  There are times when I am so overwhelmed with fear, worry, conflict, and anxiety and I look around me and see that life goes on. No one seems to notice our little patch of struggle, and if they do, they have enough of their own struggles to draw their attention.

It seems to me that having a chronic health issue is something that is truly untranslatable to those who haven't been closely touched by such issues. Sadly, many people have been affected by a wide variety of chronic health issues, and I wouldn't wish that on any one. My point is just that it's hard to feel like you are sinking, and when you look up, see everyone walk by without offering you a hand. On the flip side, I know there is nothing they could do and that I can just step forward and see if the next step is the one that elevates us out of this pit. I can focus on the fact that we are not sunk, and take strength in the growths, no matter how small. I do know I should not feel sorry for myself, or for my child. Yet, I am realizing that years of disconnection on an issue that is so consuming for our family is a wedge between relations outside this bubble of life we know. I wonder how people manage around that. There must be ways to handle this with grace, compassion, and acceptance.

Illness, on a long ongoing basis, is isolating. We make efforts to stay connected, and some days those efforts cost more than others. I am grateful for modern technology, which offers me the ability to easily access other individuals who have pulled themselves from the same pit, or who are in it beside us. Their voices, stories, and companionship are a beacon and a compliment to the friendships and love from family that have helped to build us into the individuals we are today. I have found good connections with groups through facebook, but I imagine there are many others, as well. If you have a favorite EDS support network, please share it here and I will be happy to check into it.