One of the most difficult things when it comes to living with a chronic disease is the feeling of loneliness and isolation. Many people who face these diseases were active and healthy before symptoms started and many of these diseases were able to take the life we knew away within months. Friends and family don’t always understand what we are going through. Changes in our physical ability may limit us from working outside of the house. It becomes very easy to begin feeling isolated and trapped with no one there to help. It is this feeling of isolation and being misunderstood that turns many battling with a chronic disease to the internet and online support groups.
According to Pew Internet Studies, eight percent of internet users living with a chronic disease have participated in an online support or discussion group. One person participating in the Pew Internet Study said, “[An] online support group helped me learn about the disease and provided comfort in knowing that my symptoms were not ‘just in my head,’ and helped me take steps to adjust to living with a chronic condition.”
These online support groups and information sites offer a home away from home for so many women suffering from a chronic disease. I know for myself, finding an online support group when I was first diagnosed with rheumatoid arthritis was the most valuable tool I found for dealing with my chronic disease and adjusting to my new life. I found friends who understood me and what I was going through. When it comes to online support groups, you will find many more benefits than you could have ever imagined. Unfortunately, the groups I had found back then are no longer online.
A support group can validate all your feelings. When symptoms start with most chronic diseases, many women find that being diagnosed becomes difficult. Many autoimmune diseases are so similar and do not have definite tests and because of this, diagnosis takes time. During this time we begin to question ourselves. “Is this real of just all in my head?” Finding others suffering the same symptoms and experiences gives us a feeling that it is real and not just in our head.
No matter how down you may be, support groups give you hope. Learning to live with all the changes happening in our body, like the loss of function and increased pain, can leave us without much hope for a real life again. When I went from actively walking up to five miles a day to needing to walk with forearm crutches within six months, I thought my life was over. It wasn’t until I began talking to others that I realized that these diseases have ups and downs and not all days are bad. Hearing stories of others who had been wheelchair bound but were now walking gave me hope to push forward.
They help you adjust to your new life and body. With many of these diseases, the loss of normal body functions leaves you to learn to adjust in order to do things such as cook dinner, housecleaning, writing, and even basic things like taking a shower. Your doctor may prescribe a new medication that you have questions about. Support groups become an invaluable place to turn to ask for advice, as many of the friends you make will have already made these changes or taken these medication and will have tips. I know for me, I was given a prescription for methotrexate, which is a low dose chemo medication used for Rheumatoid Arthritis. I had so many questions and was worried about what it was going to be like. My friends online, who had taken the drug, advised me to ask for it in the injection form as that way didn’t cause as much sickness. I was so grateful for this information and it made taking the medication so much easier because I knew what to expect.
You have the ability to be helpful. With a chronic disease and the isolation that comes with them, the support groups become a second family. As new people arrive to the family and ask questions, you will be able to offer advice and support. Being able to help others deal with what you do is sometimes the best therapy.
Online support groups can possibly become one of your most important methods of therapy in dealing with a chronic disease. To me, they are just as important for my medical care as my doctors are. The friends I have made over the years have become like family and there are days I don’t know what I would do without them. I am currently a member of But You Don’t Look Sick support group, but by just doing a search, you will be able to find many different support groups for every condition.
Because I believe in the importance of online support groups, and know first hand just how helpful they can be, I have created a new online community and forum for those with chronic conditions and I would love to see you there. Take a few minutes to register and become a member of the Spoonie Foodie community here.