Community - Support Systems and HCV

In dealing with chronic illness and treatment, to include all the various steps along the way, it can be more difficult when we are alone or feel alone.

One thing to remember is that you are not alone in this. You have lots of company and a lot in common with millions of others if you are living with HCV. Knowing others have the same thing is no comfort in itself, but there is a community of people like you who are out here to help.

Everyone, or almost all of us need some kind of support from others, or feel like we are part of a community. It is part of our nature as humans; we are social animals. This doesn’t mean we are necessarily social butterflies or dependent, but most of us have family and friends as part of our life. If you don’t, maybe you have some people you can rely on or trust on some level.

This is what I mean by support systems.

I am not saying that this applies to everyone. Some of us are quite content to do everything ourselves, and are entirely self-reliant. Good for you if you are one of those people but you are unique. Most of us depend on others for any number of things. Some will depend on others for financial help, but that is not what I am talking about here. I am talking about emotional support and help in navigating your way through hepatitis c, treatment, and after-care. This can be a difficult time for some of us.

In my own journey with HCV it has helped me to feel like I am part of a community. Community is a word I use in my advocacy work to describe all of us who have lived with HCV.

I have leaned on a number of other people at various times in my journey, and as I learned more and gained strength I was the shoulder to lean on for others in the community. This is peer support. Nobody knows what you are going through better than someone who is going through the same or has walked in those same shoes.

Peer navigation can be an invaluable way to help you find your way through the maze of things we hear, read, or experience with symptoms and treatments.

There are dozens and dozens of support groups and forums online. There may be hundreds by now on Facebook and elsewhere. In some towns and cities there are face-to-face support groups that meet regularly but they are not as common.

Online offers some advantages to a once weekly or monthly meeting, but face-to- face works better for others. Neither is necessarily better, and if you have the option to attend a face-to-face meeting, it may be right for you. You can choose to seek out community in both.

Online groups are open 24/7 and you can participate as much as you like, whenever you want. Some of these groups have administrators who are well informed and can answer in-depth questions, and there is an opportunity to share experiences, learn, and inform others about something you may have knowledge or understanding about.

My own preference is groups where people are friendly and not competitive, and the members are not concerned about being the person who knows the most. Drama can persist in some groups, and it is the job of the admins and the community to keep the drama in check. In the right group, face-to-face or online, you can learn and share, and develop a sense of community.

Let’s not forget the life you have with family and friends where you live.

If you have family and friends who are understanding and helpful that is great. In my own experience they get tired after a while hearing about hepatitis c and the things you are going through. I don’t blame my family for getting tired of me talking about it, and I am still talking about it years after being cured. I even write about it quite a lot too. OK, my situation is different, but what I am getting at is that a support system in whatever form it takes may be something beneficial to help in your journey.

It has been for me.