Chronic Isolation: When Your Social Life Faceplants

(Warning: a very large part of me feels like this post is cringeworthy but probably something EVERYONE with chronic illness goes through.)

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I remember my 21st birthday, sitting on my couch with my mom, eating my cake and hysterically crying.

I was feeling so alone. It was a time period where I had no friends, I was in and out of the hospital, I was no longer in school and worked from home. I had no clue how I was supposed to find friends and the idea of it seemed hopeless.

Slowly though, I did make friends. Good friends. I had friends at my bachelorette party and wedding, I had girl’s nights and went to parties.

But over the last few months my social life has just been flushed down the toilet. Between the gastroparesis, the surgery and now this port infection? I haven’t seen my girlfriends at all.

Long nights in the hospital, longer days in the infusion center, trying to stay awake long enough to get the work that needs to be done complete— There’s no energy for going out to parties. And no one is exactly rolling out the welcome wagon because they know already that you probably won’t be able to go.

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I’ve relied so heavily on my mom and husband for support. And I rely on them for my social needs too. They talk to me. Take me places. Make sure I slip a little fun into an otherwise painful era.

But they do not make my social network complete. No matter how much I appreciate their efforts. People need people. So where are my people?

Not knocking down my door, that’s for sure.

I want to say that having friends is being a friend. I think I’m a good friend. I’m supportive. I’m a good listener. I ask about their mother and their job and their boyfriend.

But then I think about all the ways that I’m a bad friend:

Like I can’t stop by their office and do lunch because I have a doctor’s appointment that afternoon.

And I can’t go to happy hour tonight because I need the last of my spoons to climb up my staircase and fall into bed.

And because as much struggles as their life has—they feel guilty venting about it to someone whose life is filled with the kind of medical drama they know is beyond the limits of normal.

Friendships need nurturing, so when our sushi nights and hangouts start to fizzle out, so does the chance that friends will be there during the worst of times.

Then you can’t help but to start to feel like friends are only really friends at the best of times. Which is a bummer—because my “best of times” are few and far between.

Which gets me to the point of wanting to wrap up all of my garbage life into a short response of, “You know, I’m the same, but what can you do?” anytime someone asks “how are you?”

 

Anyways, it all feeds into an emotional black hole of loneliness. Which is stupid because I know I have friends. I just don’t always know how to wave the red flag and say,

“I’m here! Things are still bad! I’m drowning in quicksand! But I can still be a friend too! I can still listen to your day and give you advice and be the one to give empathy and congratulations and praise! I didn’t become any less of a person just because I’m strapped to a pump and I’ve got tubing coming out of every part of me BUT my ass!”

I know that my disease means that the rug is going to be pulled out from under me every time I have a flare. I know there are certain parts of my life where I will not be able to help but to fall flat on my face every time that happens. Friendships? Not part of the faceplant. We can do better.

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I’m in no position right now to go out networking. It’s unlikely that I’ll make new friends during this period of illness.

Here’s what I can do:

  • Text, email, facebook, facetime
  • Let you know that you’re always welcome to stop by my place and hang out
  • Ask for help and company, even when the timing is wrong again and again
  • And wait.

And hope that being vulnerable at a time where you’re already, literally, pretty banged up leads to people reaching out when you need them most.

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Comments

comments

  • 🙁 I’ve lost a lot of mine over the years, I hate that feeling. But, my blog and the social media stuff I’ve done to try to promote it has actually allowed me to discover some rather fantastic people that I can honestly call really good friends now! Granted, I have never met any of them in real life, and realistically I can probably only ever met one of them in real life because the others all pretty much love in other countries… but they all understand the flares because they’re sick too and having the friendships be online means they don’t really suffer from the flares at least. It’s not a perfect substitute, but it helps. Have you been able to make any online chronic illness buddies?
    I do miss in person friends though… I’m waving the same red flag.

  • Melanie Barnett

    I found your blog through an EDS Facebook group.
    Thank you for writing so well what it feels like to live with chronic illness!
    I’m sorry about what happened to you at the hospital, that was unacceptable, and what your mother wrote was so strong and wonderful, you are so lucky to have her!
    I also read what you wrote about the difficulty of maintaining friendships with chronic illness, that has been one of the hardest things for me .
    I will be reading your blog from now on, thanks again, whenever one of us shares what it’s like the rest of us feel less alone.