Friday, September 21, 2012

What do you wish you'd known when you first became sick or disabled?

I'm doing some research for an article about the most important things you wished someone had told you when you first became sick or disabled. The focus of the piece is mostly on consumer issues but I'd be really interested to hear any of the things you wished you'd known when you first became sick or disabled. It could be all kinds of things from the RADAR key scheme, to not having to pay VAT on disability specific equipment, or really anything you wish you'd known or would be in your top list of things to tell people in that situation.

If people could leave comments, or contact me on twitter @bendygirl I'd be really grateful please. My list wouldn't necessarily be the same as your list so by getting lots of different thoughts on what is most important I'm hoping to get a balanced top 20.

Thank you!

15 comments:

Stitched Together said...

1) Go and look a disability aids website, you will see products that you didn't know you needed until it is in front of you. There are things that can help you get through the day more easily.

2) If you are in pain and the medication that has been prescribed isn't working go back to your GP and don't leave until they give you help. GPs need to be convinced to hand out the good stuff. You need to be very clear about how much pain you are experiencing in order to get help.

3) When you go to a hospital appointment take someone you trust with you. A lot of what is said will rush past your head and it will be helpful to have someone else to help you remember, or to ask a question you didn't think of at the time.

4) Possibly the most important - if you are struggling with things, ask for help. The people who love you would hate to see you struggle and are probably desperate for tangible ways in which they can make life easier for you as you go through these changes. If you can't go shopping on your own, ask for a lift, if you can't manage the laundry, ask someone to help hang it out to dry...... etc

Spoonydoc said...

1) Prescription Costs is something often overlooked and I spent an unnecessary fortune!

Obviously, first check whether you qualify under income rules.
If you get an income based benefit (eg income related ESA or income support) then you should get free prescriptions.
If your earnings are low you may also qualify and can check via form HC2.

If you don't qualify for free prescriptions under income rules you should also check whether you qualify under the rather arcane medical exemption rule. There is a bizarre list of conditions which get free prescriptions including for instance epilepsy, thyroidism and Addison's disease (among others).
If you have one of these ALL your prescriptions are free. Go figure!

Finally the prepayment certificate is great for those who have more than 3 items in 3 months or 13 in 12 and do NOT qualify for free prescriptions.
It is a one off payment of roughly £100 per year (or you could split it into four 3 monthly certificates if finances required it).
That then covers ALL your prescriptions for that period. Personally I literally saved hundreds of pounds via this.

2) I echo the above commenter regarding looking up disability aids but would add a recommendation to get an appointment with an OT. I really didn't want to do this, but it was the most helpful thing that happened. She had tons of suggestions to make life easier round the home, some of which worked brilliantly and some of which in the end didn't, but were worth a go.
A word of warning. Don't necessarily expect them to provide the equipment they suggest (cuts and all that), but regard it more as a tailored individual disability specialist who can give you great advice rather than you having to look things up online with no idea of what to look for.
I have heard conflicting reports from other people though so I suppose it depends a lot on the quality and helpfulness of the OT you get!

3) As a general comment: don't be afraid to experiment. You may have to do things differently now but that is ok! Just because at first you can't do something you used to be able to do doesn't necessarily mean you have to give it up long term.
I wasted a couple of years not doing a few of my hobbies because I didn't realise that I could in fact adapt and develop new techniques and it was "ok" to do so.
For instance despite extreme shakiness and visual disturbances I have managed to find a way to do cross stitch even though at first I had to give it up. It took a lot of trial and error but it was possible after all.

There is probably more, but this is getting way too long, lol

Bill Kruse said...

I wish I'd known I was disabling myself! I had no idea the small repeated movements under stress I was making were wearing my spine away. Work's dangerous, especially in an era when the benefits system appears to be being done away with and private insurers will no doubt all soon be using the Unum method of disability and ill-health denial. I advise against it!

hossylass said...

I wish I had known how to be more nosey.

I wish I had asked others if what I did/felt was normal.

I would have realised long ago that things were not normal (except for me).

I'm not on my own in this...

It was only be sharing that I discovered, and by that time it was medically obvious.

Also I wish I had known about DLA...

Louise Bolotin said...

What do I wish I'd known? Everything! My epilepsy was diagnosed in the Netherlands, where I was living at the time. I was given no information at all, apart from hand in the driving licence and take meds. It was pre-Web, so I couldn't do any research online and I had no access to info leaflets in English.

When I returned to the UK close to 9 years ago, my new GP organised my free prescription card for me but beyond that I still wasn't given any really useful info. No one told me I could apply for DLA, or get a Radar key, for example.

I learned everything the hard way or by diligently researching on the now-quite-decent Web. My care team has always been first class in actually dealing with the epilepsy itself but not one of them gave me any useful or practical info on actually living with it. It's one of the reasons I wrote my book Epilepsy the Essential Guide when the publisher approached me - I was very motivated to put all that hard-won knowledge somewhere others could access it all in one place.

And even now I'm still finding out things - I've always told dentists I have epilepsy, just in case I have a seizure during treatment, but it was only two years ago when I registered with my current dentist that I found out that epilepsy meds can cause real problems with plaque build-up and the subsequent issues that causes. Why did no dentist tell me before that I need to be super-scrupulous about oral hygiene and ensure I see a dentist at least every 6 months?

Anonymous said...

I used to say that I wished there was some kind of course one could attend in 'how to live with illness & disability & what you need to know now'.

I really needed help (and still could do with some), in how to understand (and explain to others) the impact of illness and disability on my life.

Social services say: "what help do you need?" I don't know, what help will help? My illness and disabilities are a complex mix that have a complex affect on my life. Social Services expect you to just know what kind of help will help you - but you don't even know what they can offer, let alone whether this will improve life or make it more difficult.

DWP want to know how your illness and disabilities affect different areas of life - I didn't understand the level of detail they needed in order for them to understand the real impact of illness and disability on my daily life. I have to keep remembering that to them I am a complete stranger, so I need to explain clearly why a particular situation (that is fine for other people) makes my life worse because of my illness and disability.

It takes a long time to understand (as a newly ill / disabled person), the full impact of illness & disability, and to understand how to do things better given the new restrictions, and what help will help.

sad times said...

How vulnerable you are.

Anonymous said...

I wish I'd known I was suffering with a real physical illness (MS) instead of being told just to get on with my life! I could have least tried to look after myself more instead of working myself to the point of exhaustion.

I also wish I had had the knowledge to fight harder when my employers wouldn't take me seriously over adjustments.

Anonymous said...

Don't go home and wait. You'll be waiting the rest of your life. Don't wait to get better. Don't wait for doctors. Don't wait for anything. Get on with it now.

And check out instructables: http://www.instructables.com/technology/assistive-technology/

Anonymous said...

As said above - I wish I had known it was MS and that people had listened - I would also like to go back and slap myself and tell my before self to enjoy things more - as so easily and so fast things can change!

I would also say dont always go to the didability places - a clock on partially signted website was £35+ on QVC the same size numbers was £19.99!

I would tell myself to find people who are going to listen and who will not just tell me I am putting it on. People like the MS society to listen and who know what is making these things happen.

We need to have people who will fight FOR us, and to understand that disabled doesnt mean underling or stupid!

I would like to tell myself to not trust the govt, and to have saved money away for years beforehand as govts can turn you into a criminal overnight just for being disabled through somethign you didnt exactly sign up to

Anonymous said...

I wish I'd known that becoming (obviously) disabled didnt mean I was less of a person.

I wish I'd understood that my fears about using visible aids were stupid and disabling in themselves.

I wish I'd had the courage to reject 'help' and advice that were actually making things harder for me.

I wish somebody had been honest enough to tell me the truth about how this society *really* deals with people who have chronic illness/disabilitys. For example the facts that many people you thought of as friends will disappear,that the medical community have very little interest in helping you to have some quality of life,and that fighting for appropriate treatment/care will become your new norm. Had someone told me that the safety nets I'd blithely believed exist for people in need are a fantasy,that the 'human rights' people bang on about no longer applied to me,and that doctors dont always know best (or indeed know 'anything'),instead of perpetuating the myths able-bodied people need to believe for their own peace of mind,my mental health wouldnt have suffered nearly as much as it has throughout this journey.

And finally (because otherwise I'd go on all day!) I wish somebody had told me that not all disability aids have to be flipping beige, ugly and 'medical looking'..

For me it was the emotional/psychological side of things that I really needed help with at first. The first few 'disability catalogues'/leaflets (full of old-people models) I was given ended up being thrown across the room because of my horror and denial that this was my world now. I'd never thought of myself as prejudiced against disabled people,I'd never been uncomfortable around obviously disabled people in everyday situations,but the presentation of disability I was given when my own body fell apart was repulsive to me. And I know from reading blogs and support sites that I'm not alone in that emotional struggle. So while knowing about things like Radar keys and VAT exemptions etc is important,its equally important to address the emotional impact of finding yourself in a situation where you need that information so that people can be empowered to use it instead of being scared to death of the alien world they've fallen into.

On a slightly different note,I've recently written a 'blog post' about societys attitudes to wheelchairs versus all other forms of wheeled transport,and I'm looking for somewhere to 'guest post' it.(I dont have consistent enough energy/brainpower to have my own blog). Would you be interested if its up to scratch for your site?
Lola

Sarah Ismail said...

I've been disabled for life but I developed reflux at 12 and I wish my physios had told me it is an associated condition with CP.

I also wish I had known that even with the best of treatment it is possible to die from associated conditions with CP. Maybe then the death of my best friend would not have been such an unexpected shock.

Dray said...

I'm a strokie. Took me years to discover that I could have some home adaptations, such as an extra stair rail, door and toilet rails, a bath board to sit under an over-the-bath shower, and get the shower moved central rather than end of the bath for free from the social services.

Sort of free. They're actually a loan until I 'no longer need them'. Whenever that is ;)

They won't do everything I need, for instance, no rails on the back door steps because the one on the front enables me to reach the back garden, spending cuts and all that.

But there was a one off assessment that took half an hour, a form to sign and within a couple of days a chap came around and fitted them.

Sunny Clouds said...

I wish I'd listened earlier to advice from others with similar experiences. For example, there was the bipolar friend who told me to claim DLA and I was saying "but I'm not disabled".

I wish someone had told me how people would dump me when they discovered I was mentally ill and that someone had told me that there are a whole lot of new friends to be had out there.

However, I am grateful for the advice of one friend and employer - "Don't think sick, because when you think sick, you think 'can't do'; think disabled, because when you think disabled, you think 'reasonable adjustments'"

That's not to knock anyone for whom sickness precludes them from doing anything, just that realising that a lot of it is about what other people will do to accommodate your needs can be liberating. I'm sure the same is the same for a lot of impairments that aren't associated with any sort of illness/disease/disorder.

Anonymous said...

I wish we had known how long my partner would suffer without a diagnosis. This means he doesn't get taken seriously, as no-one knows what's wrong with him. The worst moment was when the consultant said "it's all in his head. We don't know what's wrong with him", given that he is in constant pain and struggles to move.

Then, DLA assessed him and stated he could walk and wasn't in pain as he wasn't taking pain killers at that time. The fact he had refused medication on the basis of contra-indications, and the fact that the only pain killer that worked any more was morphine, that was also a slap in the face.

I wish I'd known that the fact he has 2 chronic conditions that affect one another would be ignored by DLA, and they would not look at what he was doing to keep himself active but rather how he was NOT keeping himself immobile.

I wish I'd known that society would not help us when I decided to carry on working and he decided to try and work for himself, around his illness, rather than either of us give up. We'd be earning more if we just took benefits.

I wish I'd known how unhelpful my employer (an NHS Trust) would be around the fact I had a disabled partner.

I wish I'd known that we were going to lose 3/4 of our household income, as we would have made different financial decisions, given that we always thought he would work in some capacity and not be limited.