Living with the loneliness and isolation of chronic illness

I’ve been meaning to write this blog post for a while. It’s been sitting in my drafts folder for a long time because I was too chicken to address it. Loneliness is a hard topic to talk about, it involves some powerful emotions, and I hate sharing emotions.

I’m the type of person who loves to be around people. Most of my jobs have involved dealing with people, the ones that didn’t only lasted a few months because I couldn’t stand it any longer. Though I’ve never been the life of the party I’ve always several close friends I could rely on when things got rough, people to talk it out with. I’ve never had any difficulty finding friends or bonding with people until I had health problems. My health problems began in earnest right after I moved to a brand new area. Suddenly I lost my access to easily formed friendships. I no longer worked, the only places I went were the places I had to go, like the grocery store or the doctors office. Those aren’t exactly social gatherings. My neighbors worked all day long and weren’t exactly social themselves. I went to church when I could, and made a few friends that way, but I quickly learned that people who want friendship expect it to be reciprocated (the nerve!) If I wanted friends I needed to invite people over, which was too difficult for me at the time (my house was a mess and I didn’t have the energy to cook). It was a lonely place to be, especially since I knew there was no one to blame.

As my health has slowly been improving I’ve been getting back into the social scene. I’ve been trying to have other families over for dinner and those friendly gestures have been reciprocated.  It’s been so nice to get outside my little world and meet new people or spend more time with old friends. Unfortunately, I know that when (and it will happen) I start feeling my worst again I have to go back to being a hermit. I hate being a hermit, it makes me depressed every time I’m forced to stay home alone because I don’t feel good. I watch as the world goes on and passes me by. People’s lives continue as they have been, while mine seems to be stopped. People move along at the regular speed and I watch them, oh boy do I watch them, I watch them while I long for my life to be the same as their’s.

As an extrovert the cure is being able to eventually reintegrate myself into society when I feel better, but what about when that isn’t an option? I spend a lot of time on the internet, reading blogs of people who know exactly what I’m going through. I call up my sister who has a different set of health problems, but who I know understands. I call up a close friend and tell them I just need to vent. In person support groups can be a great help as well, there is no substitution for talking with people face to face. All this things help, some. I’m not going to lie and say they cure my loneliness, but they help.

I’ve come to realize that chronic illness is a long lonely journey. My friends and family are a great help, but when it comes down it, this is my life. I can’t control what happens to me, I can only control how I react to it. There are days when I feel totally alone and wonder if I’m destined to always feel that way, but those days eventually pass and I can once again enjoy my time with friends and family.

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11 thoughts on “Living with the loneliness and isolation of chronic illness

  1. Yes, it is lonely, you said it well. I often think of extroverts, and how they might cope with this condition- it must be very difficult. For people who are energized and feel better with and around others, having something as challenging as this has got to be frustrating.

    Thanks goodness for social media (which isn't a replacement, but at least it's a little something to help us all connect and relate).

    I am very introverted, but even I have times when I feel lonely and like I am missing out on real life. Too much time spent in my own head isn't always a good thing, so I have to work at distraction techniques to keep my mind busy, even if my body can't be.

    Thank you for reaching out and sharing yourself on your blog. Hopefully, it provides a measure of comfort and connection.

    1. I've wondered the same thing. I've had thoughts going through my head lately wondering if many of us with Fibro are really just over-exagerated introverts.. and the stimuli in the world are just too much for us. It's interesting to see things from the side of the extroverts.

    2. It is really interesting how a lot of fibro sufferers deal with too much stimuli. That's not something that has really ever bothered me, in fact I love it. I like being around people when I'm not feeling well because it helps me forget, but I definitely think most fibro sufferers are the opposite.

  2. I understand how you feel. I've been having a hard time the last couple of months. It takes all of my energy to make it to work every day (plus physical therapy 3 times a week), that by the weekends I just want to rest and rejuvenate. Most people who don't suffer from a chronic illness don't understand our isolation. We get accused of being antisocial when we really do want to socialize but can't. Hopefully the pain stays away for awhile and you can have fun in the "real" world.
    Gentle Hugs,
    Bonnie

    1. Thanks Bonnie. i think if I was going to work every day I probably wouldn't be bothered as much by the isolation. I know I wouldn't have energy to socialize on the weekends if I was busy all week long, I'm impressed you are able to manage working and doing physical therapy!

  3. As I read this I feel sad – sad for what I was – also an outgoing person all my life – to now, a stay at home, internet geek. It is a major emotional and physical drain that lasts for 3 days or more to go to an event even with family. Oh well, as my husband says "There are plenty of people in the cemetery worse off"
    I don't want to make light of the situation, it is huge for many people with chronic illness and the world wide web is a blessing. That is why I started Fibro Bloggers to try and connect people. Some people, a small majority are taking advantage of those connections and for others that may even be too much to deal with. Thank you for reaching out and blogging and being one of those who connect.

    1. I can really relate to what you said. Most people who haven't met me since I got sick probably think I'm quiet and introverted, they've never seen the busy, bubbly person that I used to be.

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