Content note: Discussion of mental health, suicidal ideation, ableism, medical professionals.
Estimated reading time: 13 minutes
I wanted to share my experience today when I attended an NHS wheelchair assessment. This becomes particularly relevant in light of the upcoming CFS/ME parliamentary debate. CFS/ME is an invisible, variable condition that many medical professionals still deny, minimise and misunderstand, and today was just another difficult reminder of that fact.
If you would like to skip reading the background information, go right to “The Assessment”.
About Me & ME
First, a little about me and my health. I’m a 25 year old man with CFS/ME; I was originally diagnosed at the age of 19 while I was at university. At the age of 22 my health dramatically worsened and I was left unable to continue my studies or to work a typical job. I currently do a little freelancing as an illustrator because it allows me to set my own hours, work at my own pace, and not have to leave the house.
I have been using a walking stick for about three years now; it helps with my balance, my fatigue, and also serves as a visual indicator of my disability since my disability is an invisible one. I would say I use it about 90% of the time I leave the house, maybe even more than that. CFS/ME is a variable condition which means that some days, some weeks, are better than others, although I have to be very careful not to overdo it on my good days or risk ‘crashing’.
After being under the guidance of my CFS/ME nurse Amanda for three years I have managed to get to a point with pacing where I can leave the house two or three times a week for a few hours at a time. Pacing is a behavioural technique of managing CFS/ME which involves carefully measuring out activity and avoiding over-exertion. At the time I started with the clinic I was almost completely housebound and could leave maybe once every two weeks, so this is a great improvement for me, although I do have to be careful not to undo my hard work as it doesn’t take much to unravel my carefully assembled equilibrium.
Currently I live with my partner, who on top of working full-time, does all the cooking and cleaning for us both and doesn’t qualify for carer’s allowance. I live on ESA, under which I’m in the “support” group (this is the group for people who are judged to be unable to do work-related activity); I’ve been turned down for PIP twice but that’s another story.
I also suffer from depression (including suicidal ideation) and anxiety. I am an incredibly ambitious person and I really struggle with the limitations my disability puts on my life, especially at such a young age.
How Using a Wheelchair Helps Me
I’ve always resisted using a wheelchair because of internalised ableism. In my head, society would look down on me less if I didn’t use a chair; the truth is society judges CFS/ME sufferers very harshly regardless of whether we are wheelchair users or not.
In Oct 2018 I finally tried my first wheelchair. My mum was visiting and my brother and I had decided to take her on a trip to the intu Trafford Centre, a huge shopping mall here in Manchester. The trip would involve an hour’s bus ride either way, and the mall itself would no doubt be exhausting. I wanted to go, but knew I couldn’t – unless I tried a wheelchair. So I hired one from the Trafford Centre, which came to £15 for 7 hours or so, and my partner pushed me.
It was great! Don’t get me wrong, I was still tired, but not having to walk meant my energy was better spent on looking around and enjoying myself, and I lasted at least 5 or 6 hours before I really started to flag, which is much more than I would normally last.
After that experience, I hired another chair on another occasion, and it once again helped me last longer before I began to feel seriously fatigued. On several occasions afterwards, there were days I said to my partner, “I’d like to go, but I know I don’t have enough energy… I could probably do it if I had a wheelchair,” but for financial reasons (hiring a chair adds up pretty quickly) and practical reasons (the cheapest hire place was a tram stop away, and meant walking there anyway), I couldn’t.
That was when I realised I needed to own a chair.
Getting My Referral
I talked to my CFS/ME nurse, Amanda, about my experiences with the wheelchairs I’d hired. We even discussed whether a chair might help inside the house; there were plenty of times when I was too tired to get up from the bed, or the sofa, to walk to the kitchen or bathroom. I’ve not tried using a wheelchair indoors yet, but it was something I thought might be beneficial. She agreed that a wheelchair would help me, and wrote up a referral form for me; she also got the CFS/ME Clinic physiotherapist to check it over and approve it. Then it was sent off.
Much to my dismay, Amanda ended up leaving her position as CFS/ME nurse for her own personal reasons quite soon after the referral was sent off. So I had very little idea of what to expect from the assessment when I did attend.
The Ironically Inaccessible Centre
Things were already off to a good start when I received a letter saying I hadn’t attended the assessment; I’d never actually got an appointment letter. I called and had a new one sent through. Apparently this was still marked down as a ‘Did Not Attend’ on my record, even though I explained I’d never got the letter.
Then on the day of the assessment, I tripped down the stairs in a rush to get out of the house to make it in time, and cut my head open on a wall. I had to go to the walk-in clinic to get it looked at, so I rearranged my assessment for the next day.
Maybe it was some kind of omen?
Anyway, third time was the charm. I don’t drive; I don’t know how, and even if I did, I wouldn’t be able to afford a car. Since I live on ESA, I’m not well-off, so if my energy levels allow for it, I’ll avoid taking taxis. My partner was at work. So I took the bus.
The assessment centre was in the most inaccessible place I’ve ever seen, an industrial estate in the middle of nowhere. The bus driver wasn’t entirely sure where I was trying to get to, so had to ask a few people. When I got off the bus stop, I had to walk down a side lane where mud and snow had mingled to make a hazardous mess of the pavement, so I was forced to walk on the road itself and avoid the cars coming in.
There was no sign for the assessment centre so I got a little lost before it turned out it was on the far end of the industrial estate. At this point I was already feeling the fatigue.
I walked into a waiting room with two receptionists having their lunch and looking bored. No one else was there. I was then ushered into a separate room with the assessor, an occupational therapist.
It’s actually sort of painful to relive this; it was only earlier today it happened so it’s still raw to me. The humiliation and upset that I suffered is still lingering, but this is why it’s so important to get it out there.
I was immediately told by the assessor that I did not qualify for a wheelchair because I walked into the centre.
I burst into tears. I’m not what I would consider someone who cries easily, but I could not help but sob. I had had no idea that they would judge me based on the way I attended the appointment and it strongly reminded me of how PIP assessors will watch you to see if you came by taxi, bus, or if you walked, because it will go ‘against’ your case. I was already set up to lose and I hadn’t even started.
She claimed that she knew a bit about CFS/ME (admitting that she was not an expert) and that the rules did not cover variable conditions. She pulled out the guidelines and indicated to me where it said, to the best of my memory:
“We provide wheelchairs for those who require them for both outdoor and indoor use. We do not provide them for those who require them for outdoor use only.”
She emphasised the word ‘require’. Apparently, unless I was completely immobile, I did not “require” one. I argued that I did require one, and that the wording was so vague as to be useless, to which she conceded the wording was “woolly” but also said she had to stick to the rules and that it was out of her hands.
(On an additional note, she said she was not allowed to give me a photocopy of these guidelines when I eventually asked if I could dispute them. I can’t help but feel like this makes it doubly difficult, if not impossible, for someone to lodge a successful dispute.)
She also pointed out that CFS/ME is not a degenerative condition- at this point I stopped her, and told her my condition had in fact worsened from when I was originally diagnosed, even if it was not what you’d consider a degenerative condition. She said that even if that was so, I was a “young man” and that it would take years before I became worse enough to be totally immobile and therefore eligible for a wheelchair. My youth has been used time and time again as some kind of way of dismissing my condition, as if young people can’t be sick; this just felt like an extension of that, and made me feel dismissed.
She advised that I “manage my condition” in other ways, such as pacing; I pointed out I’d been pacing for three years under my CFS/ME nurse, the person who’d referred me. She then suggested buying one privately. I pointed out that as I was on ESA, I could not afford one privately. My favourite statement from her comes up next – she suggested that I save £1 a week so that I could buy a wheelchair in a year.
She argued that even with ESA, there were strict guidelines about who qualified for the mobility component. I pointed out ESA has no mobility component and she was talking about PIP. I’m very familiar with the flawed approach PIP has to variable conditions, which is exactly why I’ve been turned down twice as the system cannot account for people who can walk some of the time but not all. The fact that she mixed up PIP and ESA did not reassure me that she knew what she was talking about.
She even attempted to blame my CFS/ME nurse, who has been nothing but an amazing advocate for me for years, saying she “ticked the right boxes” in order to get my referral through and put the responsibility of denying me onto her. She claimed that she knew as soon as I walked in she’d have to have this conversation with me, and that she’d had the same conversation with plenty of other people.
It came up that my partner is my carer but that he also works full-time. She asked what I did when he was away but I needed to visit the bathroom on a bad day, for example; I said, “I wait.” What else did she expect me to say?
Throughout all of this I was crying continuously, and finding it very difficult to remain civil with her. Though I’m not sure how much can be blamed on her and how much on the rules and regulations written by the NHS, I was upset and frustrated and it came out in my telling her, “I’m pretty sure this government is trying to kill disabled people.” She replied that it was about “limited resources” and that “the world is like that”. She acknowledge it was “immoral” but she couldn’t do anything about it. I leave the reader to make their own judgement of this response.
Before I left, I asked for information on how to dispute the whole thing; she provided me with a phone number but I don’t know yet if I have the energy to fight it. I then left sobbing; I wasn’t interested in hearing any more of her thin excuses. I had a cry around the side of the industrial building, where I’m sure a walker and their dog heard me, and then made my slow way back to the bus stop.
I struggle with depression and I really felt so incredibly low in that second. With CFS/ME I feel like I always fit into the grey space between “disabled” and “not disabled”. Too disabled to work, not disabled enough to count. I’ve heard the same message from medical professionals and the DWP, over and over again.
I’ve had a medical professional ask me, after I told him I didn’t work due to my CFS/ME, why I couldn’t find a job to “interest me” since I was a smart man?
I’ve had the PIP assessor write that I “don’t look tired”.
I’ve had a fellow disabled person point me in the direction of the able-bodied toilets while I was waiting to use the accessible toilet, even though I had my cane with me.
I’ve had countless people ignore me when I stand in front of them on a crowded train/tram, and they’re sitting in a priority seat, and I have my cane out, and I also am wearing a badge saying “please give up your seat for me”.
Every single time, I hear the message that my suffering is not the right type to be supported. That I don’t look sick, so I must be fine. That my illness is made-up, exaggerated, not that bad. That on top of being unlucky to get sick at such a young age, I’m unlucky because no one believes I’m sick at such a young age.
At that point, I felt like I wanted to die.
With some phone support from my partner, and the news that some friends might be able to help with finding a wheelchair, I was able to struggle through and get home. I’m not a stranger to feelings of suicidal ideation so despite feeling lower than low, I did nothing but lie down and recover from my outing.
Now I’m trying to turn my hopelessness into something productive. To get my experience out there and tell everyone just how important it is that CFS/ME needs to be fought for, to be better understood, and to be better supported.
It’s not just about a cure, or treatment. It’s also about acknowledging the condition. It’s about expanding the narrow, arbitrarily strict categories the NHS and DWP have laid down so that people like me can actually get the help we need. Do we really deserve to have not only our friends and family disbelieve us, but also the medical community that claims to be based in science?
Please make sure you contact your MP about the upcoming parliamentary debate to urge them to attend.
I want this to change. I need this to change.
More info on the parliamentary debate:
- Contact your MP: https://www.meaction.net/2019/01/17/take-action-now-uk-parliament-debate/ (takes only a couple of minutes with an automated email/tweet)
- More info about the debate: https://www.homecare.co.uk/news/article.cfm/id/1604881/chronic-fatigue-parliament-debate-ME
The debate takes place on the 24th Jan 2019.
CFS/ME organisations to support:
- Action for ME https://www.actionforme.org.uk/
- MEAction https://www.meaction.net/donate/
- ME Association https://www.meassociation.org.uk/
Comment if you’ve had a similar experience. I know I can’t be alone.
Share if you can.