I’ve noticed a recurring theme from clients and hepatitis C and/or liver transplant folks who respond to my blog or the online magazines I write for. That theme is feeling isolated, with no family or social community supporting as they struggle.
I often express in my blogs the gratitude I have for the strong support I get from my family and friends. I am blessed to have these people in my life as I fight against hepatitis C and post-transplant issues. I can only imagine what it must be like to not have a caring family to talk to and help me through whatever changes come my way.
For some of my readers, it might be hard to hear of the support I live with if they do not have that type of support. Groups that meet in medical centers or online can fill part of that void, but there are not that many available, as hepatitis C is a hidden disease compared to more high profile diseases, like cancer. Don’t get me wrong; cancer patients need all the support from a loving and healing community that they can get. Thankfully, a lot of those programs are in place.

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But hepatitis and liver disease patients need it too, and it’s harder to find. I’m beginning to offer a support group at our local hospital, and putting together online programs where folks can share their experience with me and each other as we explore together different layers of the of the unknowns of this serious disease. (The Forums at HepMag offer support.)
However, beyond having the blessings of family, friends, or solid support groups, ultimately we must battle our feelings of fear, lack of control, and isolation from within. Repeatedly, people who face grief and pain find a way to embrace the flip side of pain and fear (like feelings of isolation and lack of external support). They may come to find a natural warmth that includes all the heart qualities: love, compassion, gratitude, and tenderness in any form. Emotions come and burn away quickly, and we either revive that same emotion or replace it with a different one, a grateful, positive attitude.
Pema Chödrön writes consistently about how to deal with grief and pain of any type.  In Taking the Leap, she writes, “People say it was like that in New York City for a few weeks after September 11. When the world as they’d known it fell apart, a whole city full of people reached out to one another, took care of on another, and had no trouble looking into one another’s eyes.”  
But, over time, folks returned to old ways. Walk in NYC now, and there’s not much tenderness or openness. We can move past our lack of support, hard as it may be, but when opening to the inner self that does not want to be fearful or isolated, we cannot drift back and let depression set in. I must, and we all must, stay strong. We can acknowledge the darkness while refusing to let it overcome us.
Try this - it has worked for many others and me. Decide what you envision your life purpose to be, and then choose one or some positive actions to help make that vision more possible. Stay in a place of gratitude, even when all seems lost. Notice what you have, and love and nurture yourself by eating thoughtfully for liver health, resting more, doing some things you feel passionate about, even small things. Get out and exercise at the level that is appropriate for you. Go to places of worship you are comfortable with. Meditate, pray to a Higher Power, engage with and see the beauty that surrounds you.
We all need support. It can come from others, from inside us, or a group, or from all of the above. Seek support. Find professional help to assist you to find inside yourself what you already know.  A coach or therapist might bring help that you can build on. Finding a way to live more gratefully can be nurtured, but know that ultimately it is up to us all to choose a path that leads to well being, peace and health, and leaves the path leading to darkness behind.
A gifted healer once told me something I believe, “Anything is possible.” That could mean Everything is Possible. I hope you find the support you need, and discover some of what is possible for you as you struggle with feeling alone.
Being in the grip of disease stinks, but there are lessons that can appear out of the pain. I try hard to keep learning them. Sometimes I win, sometimes not. It’s not an easy path to be more whole, but being firmly on the path, one step at a time, is the way to start.