Tuesday, 2 July 2013

The struggle of maintaining friendships when chronically ill....

Now this is a tough one, one that I stress over most days and have done for a good few years since I drifted from my circle of school friends. Teenagers naturally want to be socializing with friends as they grow older, its the normal thing to do. Live while your young and all that jazz (I really must stop listening to one direction haha), going out whether it be shopping, cinema, concerts, sports related activities or clubs and pubs once you turn 18.

A normal teen would probably just accept the invite to these activites and not bat an eyelid. The trouble with those of us who live in chronic pain is that our bodies instantly tense up like we know what is to come. We have an instant STOP sign in our brains.

My thoughts when somebody offers to do something turn into;

"I wont be able to cope while I'm out".
"They don't understand the amount of pain I'm in".
"They think I don't like them because I keep saying I cant meet up".
"I need to go out because I've been stuck inside my bedroom for too long and it might cheer me up".
"But my body is extremely weak".
"What if we are out all day?"
"I'm going to have to pretend I'm fine all day when all I want to do is cry".
"What if my blood pressure drops while I'm out like it does at home?"
"What if I dislocate?"

I know from personal experience I still always put on the brave face and front. This usually involves pretending I am not hurting whatsoever, my joints are totally fine and I definitely don't feel light headed or dizzy. That act in itself, is exhausting. I find it very hard to let my true guard down around even my best friends, as if I feel that being my true ill self would make them feel super awkward around a girl who looks the same as them but cant keep up with normal social trips out. It's always hard knowing you have committed to spending time with a friend but not being sure if you will be able to lift your head off the pillow when the morning arrives. The simple task of getting up and getting dressed that would've taken me 20 minutes back in the day now takes me hours. Including wanting to make my self look presentable with makeup, it takes me a good 4 hours before I am ready to leave the house and that is difficult if my friends want to set out early.

I have had to learn to be assertive, something I find difficult as I am a huge people pleaser. I spent some time with a chronic illness psychologist towards the end of 2012 who told me to know and understand that I cant change my body or its limits. The illness already has a grip on you, you need to take a bit of control back otherwise you will become even more isolated. You have to listen to your body when you are out because if not you will suffer with extra pain and agony the next day on top of your usual amount. This is a mistake I make far too often. She taught me to not make excuses but to be honest with friends about how much you are really hurting but also let them know that it would be nice to see them.

This is where the planning comes into it;
Try and figure out with your friend how you can make the day easier. Can they come see you at your house? Can you set a time limit on what you think you may be able to manage that day?
If you are out and about try and plan rest breaks. Maybe suggest going for a hot chocolate or coffee so you can sit down, or find the shoe department in a store and rest (one of my favs, resting while looking at shoes). My uncle who suffered with lung problems once told me his trick of pulling his phone out and shouting to his wife " I've just got a text hold on a minute" so he could stop and catch his breath.
I myself am still learning techniques when I take a rare trip out with friends once a month.
Because I don't go out a lot I feel like I lack confidence and have lost a lot of my character. Aswell as being very scared of pain while outside my comfort zone, I worry if somebody is going to accidently knock into me or brush past me when I am out while my body is hurting. I wonder if anybody feels that too?

I am lucky to have three understanding best friends. My mum and these three girls are the people I spend my outdoor time with. Although my friends don't understand completely what is wrong with me, they take me for what I am and I hope they don't find the time they spend with me too miserable or boring. I unfortunately had to leave school in year 10 and lost all but those three friends, it hurt at the time but I now know they are my true friends and there for me come rain or shine.
What are your experiences with maintaining friendships?


  1. Hi Nancy, love your blog. I'm also 19, with severe hyper-mobility EDS & Depression living in Cardiff. It's nice to read something for once that actually accurately reflects my feelings; but reading through about the 'worry list' when asked to do something, I have the exact same process. It'd be nice to talk to someone who can relate for once, so if you fancy a chat drop me an e-mail at philpottgeorge@gmail.com

  2. Hi Nancy, great blog :) I'm 19 too and have severe EDS hypermobility type and lots of other problems. I agree with George that your blog really reflects what we are going through and I relate to everything you are saying. I'm sure this blog will help many teens or anyone for that matter with chronic pain. Keep it up.
    George, would you mind if I emailed you? Always looking for fellow EDSers :) And Nancy, let me know if you'd like to chat and I will send you my email address.
    Amanda x

  3. Ooops just realised I turned 20 yesterday lol :)

  4. Hi Amanda, Thank you for your lovely comment, I'm so glad people are relating to my story and sharing a similar experience. I emailed George the other day and if you would like me to email you as well, I would love too.

    Happy Birthday for the other day, hope you managed to enjoy it as much as you could :) xx

  5. Hi Nancy, I too have EDS hypermobility and am 20. I can relate to lots of what you are saying. I agree with Amanda and George that your blog really reflects what we are going through and the struggle with medical professionals not knowing enough and the struggle to get diagnosed. It's nice to see some other teenagers with eds as I don't really know anyone outside of my family with it. If anyone would like to chat email me on: Sarahrules98@yahoo.co.uk

    Sarah x

  6. Hi, sorry have been having a bit of a rough time and didn't see these. By all means, anyone feel free to e-mail me (:

  7. Thank you for your lovely comment Sarah :) It annoys me that so many people are having to go through this, but I'm glad this is a way of us all relating to eachother.
    I will email you soon :)