Things we have in common

Today is Bipolar awareness day. I want to write about the things I have found in common with my friends who have bipolar. Sometimes people are surprised by this as they see mental health as ‘different’. I think on many issues of equality, health care, social care and life in general – we share the same joys and woes in many ways. *By ‘both’ I mean both me and my friends who have bipolar.

Historically

Historically there has always been a division between people with different impairments. When we hear the phrase ‘disabled’, we tend to think about people with physical/sensory or learning impairments. Not so much now, but I can remember 15 years ago when organisation of disabled people did very little for those with mental ill health. Campaigning and awareness of mental health illnesses and how they affect individuals and families was left to charities and organisations that supported people purely in the area of mental health. It felt very much an ‘us and them’. I don’t see that so much now. It feels more like a ‘united we stand’ on many issues.

What have we got in common?

Well, I read today that it takes an average of 13 yrs for a diagnosis of bipolar! That’s quite amazing. Also that 85% of people got the wrong diagnosis such as depression.

Getting the right diagnosis of any health problem is critical to get the right treatments / therapy / support etc. We all know that. The label is also really important from a psychological and practical point of view.

It can be your ticket to filling in the box on application forms that require the full name of your illness of impairment to get everything from benefit support to a free cinema pass or VAT relief (and yes the latter two are beneficial to people with mental illness).

It also gives you and your friends something to Google to see what it is you’ve got to educate yourself and others!! It can link you into peer support and other support from specific charities. It can help people at work or in education understand you more and be supportive – and you can more easily get support like access to work and disabled student grants.

1) So our first thing in common, that we can chat about and identify with, are problems with not getting a quick (and correct) diagnosis.

I know some people with MD (that’s what I have) who have waited many many years for a diagnosis. Some are still waiting. It makes life very difficult and can be a real worry. In the meantime your don’t get the right treatment and can deteriorate or take medication that does more harm than good. I have other medical problems which gave me a wrong diagnosis resulting in years of pain, GP call outs, hospital admissions and wrong medication for what was eventually resolved by one surgery. They said the diagnosis should have been obvious… hmmm.

2) Little understanding from other health care professionals.

When my friends see a Dr other than a mental health specialist (who knows what bipolar is) they do not understand how bipolar impacts on other health conditions or getting treatment for them. I’m the same – my GP said they don’t know anyone with MD, neither did my dentist, my gastroenterologist etc. etc. I have to tell them the health implications so they can figure out what the options might be and link it in with their specialist knowledge of the problem in question. It’s all a bit hit and miss really. Mostly miss.

3) Difficulty in being understood by family.

I have family who refuse to accept the nature of my impairment or just don’t understand how it affects me. This is common to people living with bipolar too.

4) Social services do not understand the nature of my impairment when it comes to ‘needs’.

This is a BIG common debate I have with my friends who come within ‘mental health services’. It can be a struggle to get the right amount of things like Personal Budgets / Direct Payments.

5) If you have a physical impairment related need for support and also a mental health need for support people only tend to focus on one and ignore the other.

People don’t see the ‘whole’ of us! We are often classed under ‘mental health’ or ‘physical impairment’ services. The box doesn’t stretch to having more than one thing for ticking purposes.

6) We both have had Access to Work and Disabled Student Allowance support – and all the ups and downs that comes with it!!

7) We both can’t drive and have a Blue Badge.

Some of my friends also have a Blue Badge – just because you can physically walk doesn’t mean you don’t need closer or longer parking. If medication effects your weight, awareness of your surroundings, memory or you have anxiety – close parking can make a huge difference (although it can be a real struggle to get due to the application process). Many people even with physical impairments struggle to get a badge.

Many of my friends with bipolar were unable to drive or hold a licence and, like me had a PA driver or a friend to drive them. My University friend, in a manic state, would try and drive cars at 130 m.p.h so it was safer for him to be a passenger and have assisted driving or like my other friends who are on medication which means they can’t drive. It was also safer for them to go quickly in and out of shops using close parking as there were more triggers walking past other shops. We could share the joys and woes of accessing shops – we are the different yet the same.

8) We are both entitled to getting Direct Payments (Social care support) if our needs meet the eligibility criteria where we live. This is cash given by the local authority we can spend on meeting our needs. We had all experienced similar difficulties getting these.

9) We can equally be harassed and victimised by other people, as disabled people.

10) We are both ‘covered’ by disability discrimination law / equality law.

11) We can both be turned down for jobs because of our impairments…. and are frequently.

We felt we were less likely to be employed and experience life on a low or benefit income. We shared the woes of being broke!

12) We all had university degrees – our impairments don’t make us stupid but studying can be difficult as was getting good support.

13) We felt we were quite capable of having great, well paid jobs given half the chance and good support.

14) We had all experienced negative attitudes caused by media – and experienced some positive ones too.

15) We have had times in our lives when, to look at us, nobody would think we had any sort of impairment – it is hidden. It is hidden when we are on the phone or talking to friends on the computer – yet we migh still be ‘ill’. It is comforting to know we understand this when talking to each other. It makes me feel good 🙂

That brings about new sets of problems and experiences. Also, when you are really ill, people might not be able to tell unless they know you well. People don’t understand when your abilities change overnight. People think you are being lazy and keep asking why you can’t go out or be social.

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Assisted living – comments re Mr Nicklinson’s quality of life.

I’ve written before on assisted dying. I’m currently in the ‘Not Dead Yet’ camp. I’m the sort of disabled person people would easily say ‘would be better of dead’. This petrifies me. I’d rather people focused on getting me the things I need to live a good quality of life, personally.

The film shows the gentleman being cared for – dangled from his hoist, legs apart in full view of the camera virtually naked – with no covering to provide dignity. Based on this sort of film footage we heard, from both him and his family, why he wants to die. I would be horrified if any carer did that in the privacy of my own home never mind in front of a camera! No wonder he feels he has an undignified life if that’s the way things are done!

I’m not going into the issues for or against but what worries me about this (and what Mr Nicklinson didn’t seem to see as an issue) is the number of comments to these news stories from the public. e.g. “After watching this programme , could anyone explain to me the reason for keeping this man alive…”. That is the whole problem, people make judgements on the lives of severely disabled people based on ‘what they observe’ from a TV programme designed to portray life as intolerable!   For better or worse, nobody has clue about what life is really like – unless you are the one living it.  Even when you live with an impairment your judgement is often clouded by other factors that change from day to day – personal mental / physical health, pressure and opinion from other people / family / friends / public , self confidence and whether you have found something interesting to do with your day!

If someone saw me, laying in bed, unable to move, dependent on a ventilator and sometimes in considerable pain… they would probably say I should be put down like some pet dog?

A torrent of ‘I agree’ posts follow this story liking the lives of disabled people to those of pets who they would have put down. These are the same people who want a public vote on euthanasia issues and similar issues.  I am not a pet – I’m a human being with the right to life?

I fear that people would end their lives when there is still a lot of mental health and physical support that might have helped (for them and their families). How sad that those who have managed to end their lives, could not access that at a time they needed it 😦 . Maybe they would have had second thoughts? With budget /care cuts, cuts for equipment and things that would make life good (but you are denied unless you can pay for them privately) …. these are the things that push us to an early grave.

I wonder if we will ever find the right balance of allowing people to die (or be killed) versus protection to preserve the lives of those who prefer to live? How long do you give people to mentally and physically adjust to acquired impairment before you agree to kill them, as they may request? Better than expensive, long term rehab and counselling?