Sing to the Choir

I’ve been ill for the past two weeks, no, I’ve actually I’ve been ill on and off for the past four months and I am going crazy. I feel like such a hypocrite complaining when my husband has been ill for the past twenty years but hey ho, I’m human.

It’s 2am and I’m sitting up in bed, sad that I’m all alone.

Did you know that loneliness is being hailed as the latest epidemic to hit the modern world?

Loneliness has been associated with greater risk of dying early and the issue has become so prominent in British society, amongst the elderly and caregivers, that there has now been a minister of loneliness appointed, to help tackle the problem.

I’m lonely because I’ve been home for weeks and I struggle to call friends and ask them to come over and see me. I have no problem asking for Ronnie but I struggle asking for me.

I can’t be the only one!

In fact I know I’m not.

There’s a reason I work predominantly with people with chronic illness and not their loved ones, because loved one’s ask for help less often.

Dr Maria Sirois is a clinical psychologist and a teacher in positive psychology. She’s probably one of the few teachers who has managed to break down my defences, make me cry and ask for help. (Yes she’s that good!)

As I sit in bed with only my computer screen for company I can’t help but think about how lonely I am and what I can do about it.

Maria states that there are three groups of people who are essential to our lives.

1. The experts

These are Dr’s, plumbers, electricians, teachers, mechanics, taxi drivers….

We call upon these people when we need them because they have the expertise we need to deal with a whole range of situations.

And then there are the

2. The non-expert-experts

These are the people who have similar experiences to you and who you can discuss the various things going on in your life with: other parents at your kids school, friends who are also living with a chronic illness (not necessarily Parkinson’s).

But the group I have often ignored and who are most vital at helping to combat loneliness is

3. The choir

The people who you can call at any time when you’re feeling sad and vulnerable. They are the ones you can ask for help, they are the ones you know will be there when you need.

For years I had a choir but never sang to them about my woes…. until I met Maria. For years Ronnie was on meds which gave rise to horrendous impulse control disorders. You would have thought I would have cried out for help, but I didn’t. I put up and shut up because I didn’t want to make his illness about me. How could I complain about not coping when I wasn’t ill? Eventually his symptoms became so bad it was hard to go out or socialise and I ended up feeling completely isolated and alone.

When he eventually crashed I remember sitting in a room with a psychologist recounting all that we had been through over the past ten years and the words that haunted me the most and sent me to therapy were, “Why didn’t you just ask for help?”

I am proud, and as I said, when your loved one is ill, complaining or asking for help feels not only like weakness but disrespectful because how can I complain when I’m not the one suffering?

But that was just a story I was telling myself.

I continued to do this until last year, when I was sat in class, listening to Maria describe an exercise we were about to do focusing on the future and I couldn’t breathe. I left the room. Moments later, facing the window and looking out I felt an arm around my shoulder and I was encouraged to let it out. I shook my head. If I let one tear go then I may never stop. In that moment my body betrayed me and the floodgates fell. I cried for a solid hour. Friends came to support me but I struggled to let them. This was MY problem.

But I was wrong. Thanks to the persistence of a few good friends my defences came down and for the first time in years I allowed myself to be truly supported. It was hard, uncomfortable and wonderful all at the same time.

Over the course of the next year I practiced vulnerability with that same group and a choice few others but it was only a year later, when Maria described the 3 types of people we need in our life that I realised the value of a choir.

The past few months I have slipped back into old patterns and I’m not as happy as I could be. I don’t feel well and I feel alone.  When I allow myself to be vulnerable with others I give myself the opportunity to be supported. People often say I have a lot on my plate but actually it doesn’t feel like a plateful, sometimes it feels like a tableful and my legs buckle. My choir give me the strength to stand no matter how heavy my burden.

So it’s now 2.30 am and I’m in bed and I’m lonely, I’m going to try and get some sleep and then I’m going to wake up in the morning and text a friend and tell them how I feel. I’m not going to feel guilty because I have burdened them, when my friends rely on me I don’t resent them and If they are busy they will get back to me when they are free (It’s important to remember that).

By allowing my friends to support me as I support them we build stronger relationships, feel less alone and in theory that could mean our longer lives could be better lives.

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Suzette Shahmoon, PhD Candidate is currently Assistant Honorary Psychologist at the National Hospital of Neurology and Neurosurgery.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®