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Friendships through chronic illness – Claire and Cherry Pie

Claire and Cherry Pie

Friendships through chronic illness

From the moment we are born interactions that we have and friendships that we make help shape the people we become.  It’s not just the positive things but the negative and adverse as well and the more life experience we have the more rounded a person we become.  By life experience I don’t necessarily mean going out and seeing the world, but having experiences that are diverse, that change the way you view things and open your eyes, things that help you really know who you are as a person and how you see the world around you.

I’d like to say something really profound such as: ‘every person who enters your life changes it in some way’ or ‘every person you meet influences the person you are’, but it’s not really the case. Some people have a huge impact on who we are and who we become, but some really don’t.

6 years ago my life changed.  Over the space of a few months it changed more than it had in any number of years.  I was left feeling confused, afraid and alone.  I didn’t know what was happening to me or what my life would be.  I had been active, employed and enjoyed a well-rounded social life.  All of a sudden it felt like that had been taken away from me.  Then I found my people and I found them in a place I never expected to – on Facebook.  In the beginning there were only 40 of us in the group, now we number over 600.  Finding a support group for Dysautonomia that was specific to people from Australia and New Zealand changed my life and brought me the things I had been looking for: support, information and friends who understood what I was going through.  It has been a lifeline and a great resource and a place where I started to find my tribe, I started to find out more about me and my place in the world.

I have always had trouble finding where I belonged or who I was; being sick a lot but never told it would be something I would always struggle with made it very difficult to feel like I fitted completely in any world.  I spent a lot of time reading – books were my faithful companions and I learned a lot from them.  They shaped me just as much as any person could and helped me develop a love for the written word and for words in general.  I often didn’t have the physical capacity of my peers and had to give up a lot of things I enjoyed and so friends I had made through these activities would slowly fade into acquaintances.  I often felt like the world was passing me by while I sat out with an injury or sinus infection.

Then there were issues with long-term friendships that have suddenly ended and ended badly. I’m not sure how I seem to attract people who think they can take me for granted or treat me like crap, but I have in the past on more than one occasion. Somehow I ended up in a couple of close friendships with Narcissists; bright, shining stars who hid their nastiness well and were masters of emotional manipulation.  It always came out eventually, there was only so much I could take before the resentment that was building up within me became too much to bear.  I think it was the romantic in me, my overactive imagination and my desire for a life that is different to the one of continued health setbacks I had that allowed me to be manipulated by them – they brought a world that was like them, bright and shining on the outside and I guess I needed that, I needed to escape my reality and believe the world and life was more than it had been to that point.  Those disasters left me a little jaded and less tolerant than I would like to be, though being chronically exhausted has helped with that too!

When I got sick I heard  a lot of stories about friendships disintegrating, people feeling ignored, misunderstood and shunned from their friendship groups and families, but I had not really experienced that.  I seemed to be one of the lucky ones whose friends stuck by them no matter what and whose family tried to understand what they were going through; but it seems I was mistaken.  It seems there is only so much that people with a limited capacity to understand a life that was so very different to their own, can endure.  They were friends I had made when I was relatively healthy but as my health and physical capacity declined slowly over the years they were unable to understand my situation and how much my life had changed.

So it ended and ended badly.  I thought I was finally getting over the past blows to my psyche but this time I was left shattered and confused. I could understand if there had been something specific I had done to cause it, but there wasn’t.  It was built on a lack of understanding, a creation of minds lacking in perspective and insight into their own selves and so overwhelmed by their own worlds they were unable to even try to understand mine.  They were unadaptable, unable to appreciate what was still there over what had been lost. They were fair-weather friends, and no matter how much it hurt, despite that fact that in many ways they had been like family to me for many years, I do know I am better off without them and they are not worth wasting my tears and thoughts on.

After they left my life I rediscovered that true friends, true friendship isn’t actually hard.  People who genuinely care will make the effort to spend time with you and listen.  They will consider things like transport, parking and seating and work around things that have to be worked around (and do it with no fuss, OMG wow, who knew that was possible!).  There are hundreds of ways to spend time with people and infinite things to do, it is possible with limited energy and physical capacity to have fun and have friends.  They just need to be the right ones.

For the wrong ones – just get rid of them.  They’re not worth the time, effort, energy and tears – particularly when you have limited energy to begin with!  Sure it can be difficult, but when the tears subside and you can breathe again you truly see how much they held you back, how deep their negativity buried into your psyche and your heart, how they made you feel about things you had no control over, how they made you feel about yourself and your situation and how draining and exhausting it was trying to maintain this friendships.

I am so very lucky that there have always been wonderful people in my life who have been there for me though thick and thin and helped me pick up the pieces when I fall apart.  The last 12 years living with life-altering chronic illness (6 years with CFS and 6 years with Dysautonomia) have been the hardest of my life and I honestly don’t know where I would be, or who I would be without them.  Friendship and support is hugely important for people with chronic illness because we can become quite isolated, it can be a huge life adjustment and it just plain sucks.

People come and go, whether that is on Facebook or in the physical world, but the wonderful ones are the ones worth keeping, worth remembering –  whether they are there forever or only for their time and they are appreciated more than I can say.  The right ones lift you up and empower you and bring something positive to your life.  For a long time I had trouble letting go of people I had loved but had slipped out of my life for whatever reason.  I would dwell on the good times and agonise over what I could do to bring them back into my life.  Now I am learning to let go of them when I need to, I can’t hang on to every wonderful person who comes into my life, no matter how much I would like to.  Paths cross, converge and diverge, it’s just life.
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