Living with Chronic Illness and Pain Can Be Lonely

Years of dealing with chronic illness and now advocating for arthritis and fibromyalgia, I know first hand the reality of that loneliness. A person dealing with a chronic illness can feel alone even in a room full of family and friends. There are two reasons why we feel lonely. First, because of the physical inability to do things as a result of our conditions and second, because we feel like no one in our lives understands the struggles we face daily.

Believe it or not – loneliness and aloneness are two different things. A chronically ill patient feels both of these things. While support groups help with the loneliness part of this, you still feel alone in your own body.
Loneliness is the feeling of isolation and disconnection because certain needs in your life are not met. The needs that are not meet in the case of chronic illness and pain are the inability to get others to understand especially when you are unable to describe those feelings in words and also the inability to feel in control of your body.

Aloneness is very hard to describe. This is generally the feeling like you are so very alone in this world. I once described this feeling to a friend as, “feeling like something was nagging at the inside of me and eating away at my emotions.” I am not even sure if that is an accurate description because all of us feel differently when it comes to aloneness. However, this is how I felt when I was first diagnosed. I would go online and read stories of those suffering and I would end of in tears because I knew those people were alone too. Those first six months after my diagnosis were probably the most alone I felt in my entire life. I felt like everyone around me was “normal,” and I wasn’t. How could I be normal in a world full of healthy people?

It did not take me long to realize that I wasn’t alone and that were so many people out there feeling what I was feeling. They were others like me struggling to find meaning and purpose in their lives despite rheumatoid arthritis, fibromyalgia, arthritis, chronic illness, etc. I wanted a reason to feel like I belonged and I found it among those who understood what I was feeling. I started blogging about my feelings and the response was overwhelming. I was outspoken about these feelings and others would tell that they were feeling the same way but couldn’t put those feelings in words or they were afraid to speak up.

It took time but I learned one day at a time that I wasn’t alone. I am not saying that these feelings do not sneak up on me from time to time because they do, but I learned that while I can’t always get understanding and support from family and friends, I could find it among those who understood via support groups and arthritis/fibromyalgia/chronic illness bloggers.

How do you deal with feelings of loneliness and aloneness?

Does support help or would you rather sort through these feelings on your own?

How have these feelings changed now that you had time to learn how live with your diagnosis?