Years of dealing with chronic illness and now advocating for arthritis, I know first hand that chronic illness is very lonely. A person dealing with chronic illness can feel alone even though he or she in a room full of friends and family. There are two main reasons that chronic illness patients feel so alone. The first is because of the physical inability to do all the things we want to do because of our symptoms. The second is because we feel like no one in our lives understands the struggles we face everyday.
Many people in my life, including those who struggle with me, tell me that they wish that they were as strong as I am. In all reality, this is the person I present myself to be. The person I am has physical limitations and often feels alone in a room full of loved ones. Loneliness and aloneness, believe it our not, are two different things. Chronically ill patients feel both. While it does help to be a part of support group, or know others who struggle, you still very feel very much alone in your own body. Loneliness is those feelings of isolation and disconnection you feel when certain needs in your life are not met. With chronic illness, that comes with the inability to get others to understand how you are feeling especially when it is hard to describe or put those feelings into words and also, the inability to feel in control of your body.
With RA, FMS, or any chronic pain condition, there is going to be a loneliness factor. We all go through the “Oh, woe is me” and “why am I so alone?” parts and then, our lives get busy and we forget, and then we remember, and the patterns goes on. On the days where I feel like this, I try not to blog because most of the people who read my blog often know when I am feeling down. Sometimes, especially at the beginning, during (of course), and towards the end of a flare, I find myself wishing I could find a place to cry. Regardless of how many people around me say they care and that they are just a phone call away, I still feel very much alone and in particular, in my own body. Chronic illness is more than just pain and multiple physical symptoms; it is also the feeling of being very alone.
When I am asked what is like living with these conditions, I try to explain the physical aspects while trying to leave out the emotional. I remember in the first months after diagnosis when people I asked, I would get really upset and start to cry. The first six months after diagnosis of RA and FMS were the most emotional of my life and being asked what it felt like was the loneliest feeling imaginable. I wanted to fit in but I felt like everyone around me was normal and I wasn’t; so how could I fit in? I felt like I weighed 500 lbs because of the swelling and I also felt really ugly. My conditions were eating me up from the inside-out and it felt like they were nagging at my soul.
I would go online and read about the struggles that others were facing with similar conditions. Those stories would leave me in tears because those people, too, were very lonely. Then, it hit me that they felt what I was feeling and for the first time, in a long time, I realized that I was not really that alone. There were others, just like me, struggling to find meaning and purpose to their lives despite RA and FMS. I wanted a reason to belong and I found it among people who were looking for the same thing.
Feeling alone does not mean you truly are. There are people to connect with who understand and who really get what you are feeling. Sometimes they are a click away on your computer and other times, they are in your city. You can always ask for support from them and because they know and understand, they will give it to you. For each of us, there are always days where a little extra support is necessary. So, despite the ever so lonely feelings that chronic illness has to offer, none of us are truly alone. We just need to know where to find support.