Personal independence, anxiety and the right to choose

communication

Communication is something I have always struggled with. I have no difficulty expressing myself, particularly if I can write rather than talk, but two-way instant communication has never been something that comes naturally and I cannot communicate effectively without employing learned strategies with deliberate effort whilst being severely anxious about whether I am getting it right or not.

It has taken a long time to work out what the barriers exactly are and why talking to people is such a stressful activity. In my early teens, before I was diagnosed with Ehlers-Danlos Syndrome, I was diagnosed with general anxiety disorder, social anxiety disorder, panic disorder and at one point agoraphobia. Years of therapy and psychiatric medication mostly made it worse – appointments with psychiatrists, psychologists, hospitalization in mental wards and group therapy was one of the worst social experiences I have ever had.

I was seventeen when I saw my first occupational therapist. It was the middle of the winter, single digit weather outside and I climbed out of the car and stepped onto the icy cold tarmac of the car park. I knew it was icy cold because I wasn’t wearing any shoes. I had never been fond of shoes, but during the last year wearing them became intolerable and so I refused. People thought I was crazy anyway, so what harm could it do to at least be comfortable and crazy.

I walked into her large office filled with equipment and blinked at the bright, fluorescent lights. She turned them off. I sat down on chair at the table and fidgeted. Dining room and office chairs have never been comfortable. She verified some basic details and then gestured to the gym mat and exercise balls on the floor. Would you be more comfortable sitting on the floor? I nodded. We moved over to the floor.

She had some beanbags, pulled them out and said make yourself comfortable. I sat on the mat. She said seriously, make yourself comfortable. I did. I piled some beanbag pillows, folded them around my shoulders, place one under my knees and smiled. I didn’t realise that I was smiling. She returned the smile and I relaxed. I didn’t hurt any more. I realised that this was not going to be another place where my endurance is constantly tested.

Shoes_and_Fruit

I saw her a few times. We experimented. She realised that I had severe issues with proprioception and when I closed my eyes I couldn’t tell where my body was in space and it made me very anxious. We talked about proprioception, what it is, what it does and worked on techniques to help me manage my shortcomings. At our last session I was wearing shoes.

They weren’t particularly comfortable, but they were sensible. I had chilblains and blisters on my feet (I get those every winter whether I wear shoes or not) that hurt more inside shoes, but pain has never been a deciding factor in my life, so that was okay. When I walked I had to look at the ground very often as I couldn’t tell as well when my feet struck the pavement, but we had talked about that and practised unobtrusive ways for me to do so that other people would never notice. I still don’t wear shoes given the choice, but I do when I know it would be beneficial.

I stopped seeing her after a few sessions, but she had opened a door of possibilities that had never been opened before. Maybe, just maybe, there were some non-imaginary barriers and if I knew what they were and addressed them, maybe I would get better. It took a long time to get better. It took more doctors, an EDS diagnosis and a few years to come to terms with what all of that meant. I was in my late-twenties before I realised that doctors, diagnoses and drugs do not materialize a problem, it simply labels bits of who I am with certain words. Sometimes it helps, sometimes it doesn’t. Sometimes they get it right and sometimes they get it wrong. Most of the time,  all the opinions, advice and interventions are superfluous to day to day life.

A health professional willing to form a partnership with a patient is invaluable. It is rare for anyone in the medical profession to actually listen to anything other than their set flowcharts of diagnosis and treatment. Of the hundreds of doctors I have seen over 35 years, only a few listened to me and really tried to help me achieve the quality of life I wanted.

William Wilson Photography

The medical profession still hold a lot of sway over the people they support. I think the world is still changing. I think the balance of power is shifting. Patients now have a lot more say in how they are treated than they did 50 years ago. Most of the time, I feel like an active partner in my health. I participate in medication choices, I have a say in dosage and whether I think something will work or not is taken into account. Yet there is always that fear.

As every medical appointment approaches, I panic. What if this time my doctor isn’t available? What if they get the details wrong and write it down in my medical history? What if they think I am exaggerating? Faking to get attention? (One of the silliest notions I have ever heard, the last thing in the world I want is attention. I could quite happily thrive without ever setting foot in a medical establishment again). What if they decide that one of the resources I have, that I worked for years to get, isn’t really necessary?

My life lies in somebody else’s hands. I could loose my house, my car, my wheelchair, my independence, support funding, my blue badge, my daughter and all of the above combined. Every time I walk out of an appointment that went well, it is with a sigh of relief. I wish the people involved in the lives of people with disabilities realised how much they hold in their hands and treated other people’s lives with a little more respect. I wish they could all be the exception to the rule – willing to keep an open mind and recognise that we are not cubes that fit through square holes.

People come in different shapes and sizes and trying to squeeze them all through in the same shape is not only a strange way of doing things, but also in the process crushes the people being squeezed (or outright rejected) to fit. Hopefully, the balance of power will keep shifting and maybe one day, everyone will have the right to choose (with whatever help and support they need to do so) what they think is best for them, rather than have someone else decide that for them.

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2 Comments

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  1. Zoe Young Kirkby (@CraftygasheadZo) Tuesday, 25 March 2014 — 11:43

    I’m so glad I have found your blog. I find myself nodding as I read as I recognise myself in your words. I was only diagnosed with EDS/BJHMS 5 yrs ago. I’m in my late 30’s and have struggled all my life. I also have Fibromyalgia and Scoliosis. I feel exactly the same, I feel all genuine people do. I’ve only just started getting proper help – equipment & an understanding OT lady. The relief is huge, knowing someone gets me and can see how much I hurt and how I can’t do things. I’m not imagining it. It’s real. Thank you for sharing your experiences, it’s nice to know someone out there is thinking, doing the same as me. Take care Zo xx

  2. It took a long time after I was diagnosed for the implications to really sink in and it’s a really big struggle to receive acknowledgement as well as appropriate equipment, help and support.

    Thanks for getting in touch. It’s always nice to hear that someone else gets it, even though that also means someone else lives with the issues that come with EDS!

    At least half the battle is won, right? Knowing what we need even if it is a struggle to get it, is better than not knowing what’s going on, why or what we can do it make it better.

    Great to hear you found an understanding OT, don’t ever let her go! :)

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