Tuesday, 23 August 2011

Joining the dots

I hate phonecalls. I hate them.

Phoning my mother I can manage (although apparently not often enough), but phoning someone I don't know is like torture. It is one of the more debilitating remnants of my mental health issues.

Oddly enough, making calls on placement isn't an issue if it's work-related (e.g. "hey, I'm a medical student on ward 6 returning a page for Dr Wotsit because he's in surgery right now" = fine), but if it's in relation to myself it's different (e.g. "hey, I'm a medical student starting a placement with Dr Wotsit on Monday and I'm wondering where I should meet him" = horrible).

One of the worst things for me since my mobility and self-care have become more and more limited is that I feel like I'm constantly on the phone - making appointments, phoning ahead to future placements to explain my needs (because as I will no doubt mention again, the system my med school has in place of communicating my needs to placement supervisors is [bad word]), phoning to ask for information on particular services and how I can be referred to them etc.

There is another post to be written about acquired versus congenital (from birth) impairments, and this is not it. I fall someone in between anyhow, because although I have a genetic condition, I was not aware of its effects for a long time. To me, the single worse thing about acquiring an impairment, is that noone tells you what you should do next*.

When the consultant diagnosed me with my condition early this year she discharged me. She provided no information about what I was supposed to do now - nothing about social services, benefits, occupational therapy, university disability services - nothing. She discharged me back to my GP who didn't mention any of them either.

I was lucky, in some ways, because I was aware of these services, now. I had become aware of my eligibility for most of them when I figure out my diagnosis via the internet just over a year ago. Still, awareness of them isn't worth much when the mound of paperwork proffered by some agencies and the refusal to become involved without 'official' diagnosis by others, means that they aren't really an option.

I've been eligible for certain help since long before I started uni because of mental health problems, but I wasn't aware of it. Again, GPs, psychiatrists, therapists, teachers and the medical school all failed to make me aware of the services that were available to me as a disabled person.

I guess they all assumed someone else would mention it. I also believe that a lot of those people didn't consider me disabled until I began to develop physical problems.

I think an overwhelming factor connecting all of these individual failures to signpost (if you will) was ignorance. I don't think that most medical professionals are truly aware of who is eligible for what help, where they can find that help and what hoops they have to jump through to get it. That is a massive problem.

Some days it feels like the system is deliberately opening up cracks for me to fall through. I spend hours sitting on the phone chasing down the next person who might have some answers - but those answers always hide behind more phonecalls, more paperwork and more assessments from people I've never met.

If it was just a little bit easier...

But there's no point even finishing that sentence. It's only going to get harder with cuts and changes and reshuffles.

Please don't think I've forgotten my blessings. I hold them in my head and incant them like a spell. I remember every day that so many others are bearing more of the brunt of this system than me, that others face systems far more rigid and uncaring.

I just can't shake the feeling that it's all about to come crashing down on my head. I think the word is overwhelmed. I spent this afternoon making phonecalls, and I will spend tomorrow doing the same. None of them seem to get me anywhere, but a girl can dream.

How have you dealt with the endless hoop jumping that seems to come with being disabled? Have any organisations helped you to deal with it all? Leave a comment or email disabledmedic[funny at thing]hotmail.co.uk

*This may be less relevant for impariments such as spinal cord injuries which tend to involve some kind of systematic, inpatient rehab - although I imagine still implies to a greater or lesser extent


  1. Mmmm.In some ways, being declared Batshit Crazy means that *everyone* thinks they get to tell you what to do next & how to run your life, even when you are out of hospital. More often about what you can't do, than what you can, mind.

    When I was at uni, disability services were good with forms, though they didn't know much outside HE - eg no-one ever suggested I apply for DLA.

    One of my biggest problems is that when I really should be getting extra help, I can't cope with the forms involved.

    I was interviewed for a blog about it here last year: http://wheresthebenefit.blogspot.com/2010/10/world-mental-health-day-fighting-to-be.html

  2. My uni disability service doesn't do forms. They were surprised I hadn't already applied for DSA and DLA, but they won't help me with it.

    I'm supposed to get the student union to help me with it, but other people have told me that they're useless, and quite frankly I don't have the time. And I don't want to tell yet another person about how I need help getting off the toilet.

    "when I really should be getting extra help, I can't cope with the forms involved." << that.

    I don't know where to start.