ME, Myself and I: Benefits – The Good, the Bad and the Frustrating

I guess before I start I will say that this post is not going to be information on the benefits you can get, though I will mention the ones I have experience with, but more the experiences I’ve had while trying to claim benefits. I have encountered both ends of the spectrum, the very good and the bad kind where I had to appeal the decision with a lawyer to actually claim any.

As I was fifteen when I first became ill I think I was too young to claim any benefits, though I didn’t want to anyway. It’s a bit odd when you have M.E., it’s not one of those illnesses that a lot of people know about, though I think more doctors are aware of it now, but we didn’t know anything about being able to claim benefits. I also probably took a lot longer to actually try to claim any, even when I was old enough, because I really didn’t want to. I guess it’s part of the whole stigma of not being able to work, being on benefits, and all the jokes about M.E. not being a real illness or fake claims.

I just didn’t feel like I should be claiming benefits, I guess I was too proud in a way, it seemed wrong when there were people more ill than I was who were working or doing things and I just felt like I shouldn’t be trying to claim them. I think I’d been ill five years before I did actually try to claim any and I wish I had earlier as it gave me a bit of independence as well as the legal part of paying in national insurance for a state pension in the future. If you’re too ill to work with M.E., or any chronic illness, I would say try to claim them sooner rather than later. It doesn’t matter what illness it is, if you’re not well enough to work and make enough money to support yourself then see if there is any help you can get.

The first time I tried to claim benefits I did try to get help from the Citizens Advice Bureau, I’m not sure what other countries have as an equivalent, though they weren’t very helpful. I ended up not filling the forms in in a way that showed how severe my illness was and I was told I didn’t fit the criteria. I think the fact that I ended up filling it in honestly for an average day but at the time my health was a lot more up and down than it is now and my average days probably were only there 50% of the time, I had some good days and a lot more bad days and there was a greater knock on effect. This is something that the forms don’t seem to consider, that although I can lift my arms over my head to put away a mug a few times a day I couldn’t do this multiple times in five minutes without my arms being sore and like jelly the next day. So my first attempt at claiming benefits wasn’t successful. This was when there were DLA and IB in the UK, both were for if you were too ill to work but they had different criteria, I failed the DLA because I could do enough not to get it and I failed the IB because I hadn’t paid in any national insurance at the time.

Luckily, a couple of years later, I was successful the next time I applied and this is the ‘good’ part of my experience. This was on the old system in the UK still but after filling in the forms I had the medical assessment and the doctors I saw, I think there were three on different occasions as you had a check up every year, all knew about ME to some extent and got that there were after effects from doing anything. I don’t think they even made me do some of the exercises that I was expecting at the time. It’s great when you can find a doctor who understands ME and I think it was pure luck in these instances as my later experiences were at the same centre.

Then the system changed and I had the assessment like before but it wasn’t a doctor it was a ‘medical professional’ though I don’t know what that means really. The first time I had an appointment with one of them I was told I could have the benefits but I had to go to meetings every two weeks at a local Job Centre Plus. Fortunately for some reason I was never asked to go to any beyond my first two as I don’t think I could have done it at the time. I think that the person at the centre realised that I was too ill to be trying to get into work.

And now for the bad experience, at least it’s bad as far as applying for benefits went. I had the same assessment and I thought it went OK really, there were a few times where I had to explain what I meant a bit more than in the previous ones and I don’t think that they got how much of a knock on affect there is doing some of the things they asked me to. That’s one thing I would say to stress as much as possible if you’re going into one of these, keep saying that you can do this now once but if you had to do it multiple times then you’d be in pain, that you can’t do it too often or you’re stuck in bed the next day. As I hadn’t had to explain it so much in past meetings and it had gone OK I thought it was all fine until I got a letter saying I was going to be put on Job Seekers Allowance which would mean that I had to go to regular meetings and actively look for a job. At this time I was able to do maybe an hour a day on the computer with breaks in between if I stayed at home, I was in no way able to work. I’m still not well enough for a proper desk job but I can do a lot more than I could then.

There was plenty of ringing around places, I think I spoke to four or five different organisations and different branches of the Job Centre Plus to work out what I was meant to do. In the end I was referred to the local drop in centre and had a meeting with a lawyer. It was a free meeting, I can’t remember the exact name of the service and apparently it doesn’t exist under the same name anyway, but it was the equivalent of a state lawyer I think. She helped a lot when it came to making sure we had the right paperwork, lots more trips to doctors for letters, and went back through everything we’d kept to organise things like hospital appointments, referrals, things that could show I was too ill to work over a long time, as well as going through the questions again. In the end we had an appointment for an appeal over eight months after my benefits had been stopped. I am very lucky that I could live with my parents and that they are well enough off that I could live here without paying any rent, if I didn’t have this option then I don’t know what I would have done then as I had no income at all at the time.

The appeal itself wasn’t too bad, I was expecting something much worse given some of the horror stories I’d heard from various others who had had to go through the same process. I think I may have had a good group of people who were listening to me as I don’t think they took long to deliberate at the end. I had to explain what I could do, whether I would be able to do X and Y and how many times I’d be able to do them. They also asked about any references I had and how my life then was different to before I was ill. It was definitely draining and I know I zoned out a few times as it took a lot of concentration but it was one of those things that I built up in my mind to be a lot worse than it turned out. After this I was, fortunately, allowed to claim benefits. I was put on the work program again but this time it was meetings once a month and I have definitely found that the group of people I have had contact with have been great. I think I might do another post on that as I have just finished the Work Group Program thing that you have to go on for two years so I could explain what I had to do in it and how it all worked as I know people will be going into it now so it’s always good to know what to expect.

I’m not sure if anyone going into it will read this but I know I would have been happy to find out what I was getting into and read others’ experiences before as I ended up building that up in my mind too and I shouldn’t have.

Overall I think that there are some tips I would definitely give to anyone who is applying for benefits. The first is definitely keep everything you get about your illness. It doesn’t matter how small it is, I have a file full of things like old forms I filled in, referrals from years ago and any leaflets about ME, this might come in handy if you have to find evidence and at the least you’ll have dates for a lot of them. Second, check which ones you might be able to claim and even look at those you might not in case you actually do fit the criteria. When it comes to filling in the forms don’t down play how much it affects your life, it’s always depressing doing them so try and find something positive to do afterwards but be as honest as you can about your bad days as well as your average days. I ended up adding an extra page or two to explain about the differences a couple of times and any details help as they have referred back to the forms I filled in at any assessments I’ve been to. It does help to have someone who knows you really well to help with filling the forms in as well, someone like a parent, friend or partner who knows you on your bad days as well as your good ones. If you can photocopy or scan the forms too, then next year, or whenever you have to fill it in again, you have a reference to what you put last time and can pretty much copy it and make any minor changes that have happened, it’s a lot less draining than writing it from scratch.

I’m not sure if anyone is still reading but I hope this is helpful to someone. I know that my bad end of the spectrum isn’t the worse as I did end up getting the benefits after the appeal and I know some people who haven’t. I also know I am very lucky to be able to live at home, it means I can save a lot of the money I get as benefits. I may not be using it all now as I am not able to live on my own at the moment because of my health but it does mean that in the future I have some savings for something like a car or even as a bit of a buffer for rent when I can live on my own as I know that I probably won’t be earning much if my business gets going. It has also meant that I have some money to start up this business, if I didn’t have the money from benefits I would have gone into my savings over the past seven or eight years I have been on them just buying things I need.

I know a lot of the things I post about on this blog aren’t things I need, I guess that’s one reason why I haven’t posted about this topic before, I spend money on things I don’t need but then so does everyone. I don’t have the energy to spend it on nights out, or even days out, and I do put a lot of my money aside as savings. I’m not sure why I feel the need to justify this to you guys reading this but I do, over the years I’ve seen enough stories about people saying bad things about people on benefits.

This post ended up a lot longer than I meant it to. I hope it might help someone and it wasn’t too much of a wall of text. I might do another post on how I found the Work Focussed Group, or whatever the official name is, maybe next week.

I posted about this last week on Wednesday so I’ll link it here, but I am planning on doing a post some time during ME Awareness Week (12th May – 17th May) about bloggers with ME and linking to any of your blogs so people can find them and we can read each other’s stories. I think it’d be good to not only bring awareness to the chronic illness itself but to bloggers with it and our everyday lives and experiences.

Anyway, I hope you’re all as well as possible and the weather isn’t too weird where you are. Tonight it ended up snowing which is odd considering it was about 15 degrees centigrade and sunny the other day. Hope you’re having a good week.


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