BADD 2014: Are Social Workers Part of the Problem?

This post is part of Blogging Against Disablism Day (BADD). Please click the link to read the other posts being published for BADD 2014. The scope of social work varies around the world; please note that I am writing from a UK perspective.

When I was a first year social work student, I studied a module entitled 'Values, Ethics and Empowering Practice'. For me, this was one of the most fascinating and engaging topics of the whole course. It opened my eyes to things I had never considered, gave words to concepts I recognised but had previously not found the words to express, and heavily influenced my personal attitudes.

The module also made me uncomfortable at times. During the course I realised my white, middle class privilege for the first time, and felt immediately guilty for it. I realised that racism isn't dead (yes, I was quite naïve aged 19). Lastly, I was confronted with the idea that sometimes, social workers are part of the problem. Sometimes, they contribute to the oppression of minority groups, instead of working against it.

Looking back at my old lecture notes, the first slide of the lecture on disablism (given by Professor Lena Dominelli) clearly states that social workers have contributed to the oppression of disabled people. I also noted how disillusioned with social workers Michael Oliver (a leading disabled academic) seemed in his book The Politics of Disablement (1990). This has stuck in my mind ever since. I felt intense discomfort at the idea that I would be seen as a problem by disabled people. I was being taught that I was supposed to be part of the solution.

This discomfort only continued when I became disabled myself and started reading disability blogs, some of which have contained stories of negative experiences of social workers and social services.  What was I supposed to think now? I felt like a fraud identifying as disabled, when really I was on what appeared to be an opposing 'side' (despite the fact that I was no longer working at this point). I knew that those experiences of other disabled people weren't right, and I longed for them to have experience of good social work practice. In an ideal world, social workers and disabled people should be on the same 'side'.

I had hoped to write a post exploring in detail how and why social workers contribute to disablism, however it became clear that if I were to fully explore each idea it would end up being a series of posts (which I don't have the spoons to write) rather than one. So I have done my best to summarise everything instead.

Let's start with how things should be. Here are some things I was taught in university that I feel are relevant to social work with disabled people. These are from my memory of what was said at university, unless otherwise indicated.

Self-determination This is the idea that the person, not the social worker, should be making decisions and choices about the person's life (Biesteck 1961)

Empowerment The idea that the social worker's interaction with the person should result in the person having more power over their life.

The social model of disability The idea, developed by disabled people, that people with impairments are disabled by a society that is not structured to be fully inclusive of them.

Seeing the person in context During training, we were always told that we must view people we worked with within their social context. When working with disabled people, this means acknowledging the oppression they face in wider society.

Addressing structural inequalities Lena Dominelli's view was that the role of the social worker was not just to assist people on an individual level, but also to challenge the structural inequalities that impact on the people social workers work with. She felt that social work could not be truly effective without this latter element.

Holistic assessment A social workers' assessment should consider all aspects of a person's life, not just tasks of daily living such as eating, washing and dressing. An assessment should also include discussion of working life, leisure activities and hobbies, religious or spiritual practice, family life, social life and relationships. To a certain extent, this is represented in current social care guidance.

The person is the expert in their situation.

Needs-led assessment Current social care guidance states that assessments should be based on what the person needs rather than the resources available.

Partnership approach The social work relationship should resemble a partnership in which the social worker and person work together to overcome the problems and barriers the person faces (French and Swain, 2002).

Anti-oppressive/anti-discriminatory practice Being aware of the oppression and discrimination that people face, and ensuring that social workers' own actions do not condone or contribute to this experience (Thompson, 2002).

It is important to note here that the values of social work haven't evolved in a vacuum. They are a response to the campaigning of the marginalised groups with which social workers are working.

Whilst in the 1950s, social work was heavily influenced by psychoanalysis, the social movements of the 1960s and beyond have gradually pushed social work towards the ideals of social justice and the idea that social workers should be enabling and empowering people, rather than being an expert who is prescribing solutions to people's problems. Moreover, social workers should be actively addressing their own contribution to the oppression of marginalised groups.

So where does it all go wrong? I'm going to suggest that there are several ways in which good social work practice is compromised:

Lack of resources This has always been a problem, and in the recent economic and political climate has only got worse. Social workers are not always able to put in place what the person needs (and/or wants) because the funding just isn't there. Additionally, social workers themselves are viewed as a resource. Social work time costs money, so there is pressure to manage a higher caseload (in order to employ fewer social workers), which means less time spent with each person. The net result of this is that social workers are not able to really get to know people, nor do they have sufficient time to reflect on their practice, meaning they will be more likely to inadvertently contribute to oppression, and less likely to assist the person to achieve their aspirations.

The eternal tension between what social work wants to be and the role that the government have prescribed I have set out above the ideals that social work as a profession aspires to. However, this is often at odds with the ideology of central government, whose policies social workers have to implement and who make the laws that define the social work role.

The influence of wider society on the social worker Society at large still subscribes to the medical model and the personal tragedy model. If social workers are not careful, they can internalise these ideas and this can influence their practice.

The watering down of social work values Lena Dominelli in particular has picked up on the issue of empowerment basically not really being empowerment at all. She uses the example of complaints procedures (against individual social workers) as appearing to empower individuals but actually making little difference because decisions about the way services are designed and delivered are made by management (Dominelli, 2000).

Lack of professional voice If social workers are to address structural inequalities, they need to speak out against these with a collective voice. Unfortunately, social workers have little respect in wider society and their professional opinions are rarely valued by those in power.

Allowing knowledge of the available resources to influence their assessment.

Imbalance of power Oliver (1990) states that social workers, as professionals, hold knowledge and information about what is available. This means they hold power over a person who does not know these things. They also have a certain degree of power in terms of gatekeeping, as they are the ones who determine what the person needs.  Oliver (1990) also points out that professionals rely on disabled people in order to have a job role, so have a vested interest in keeping people dependent on services.

Conflicting roles The role of gatekeeper is in direct conflict with the idea of social workers empowering individuals.

Production line-type processes and tick boxes When assessment structures are reduced to ticking boxes and following a process, social workers may fail to engage fully with the person's aspirations, instead concentrating on meeting basic needs.

As you can probably see, a lot of the causes of disablism in social work are wider issues that are often beyond the control of individual social workers. However, social workers have a responsibility to make the changes that are within their control.

So, how can we work towards better social work with and for disabled people?

My suggestions to social workers are :

• Defend your professional values and be vigilant as to where and how they can be compromised. Do your best to stay true to what you were taught at university, where social workers themselves define what social work should be.
• Be aware of and challenge disablism wherever possible, including within the organisation for whom you work.

• Remember that the interaction with the person is the one thing you truly do have control over. Respect and acknowledge the person's aspirations and oppression, even if you can't see a way to do anything about them. If you are unable to provide something, explain this politely, respectfully and giving the reasons. This might seem obvious, but when I mentioned bad experiences that disabled people had, insensitive comments about lack of resources and disabled people's aspirations for their lives, was one of the things I was referring to.

• Be willing to learn from disabled people.
• Campaign alongside disabled people.

My suggestions to disabled people:

• Don't be afraid to challenge your social worker. Please do it respectfully, but don't remain silent if something isn't right.
• Recognise that there are some things which are outside of your social worker's control.
• Part of internalising society's attitudes towards you is accepting the idea that other people know what is best for you; remember that you are the expert in your own situation.

• Keep coming up with your own solutions and suggest them to your social worker.

• See your social worker as a resource. Ask questions, obtain information. Being an active participant in the interaction makes it implicit that you expect a partnership approach.
• Keep campaigning for your right to better social care.

I hope this will give social workers an opportunity to reflect on their own practice. I also hope that it gives disabled people some insight into what a good social worker looks like. I believe that social workers and disabled people can work together to address the structural inequalities that affect both disabled people and the ability of social workers to effectively empower them.

References

Biestek, F (1961) The Casework Relationship London: Allen and Unwin

Dominelli, L (2000) Empowerment: Help or Hindrance in Professional Relationships in Stepney, P and Ford, D (eds)  Social Work Models, Methods and Theories. Lyme Regis: Russell House Publishing

French, S and Swain, J (2002) The Perspective of the Disabled People's Movement in Davies, M (2002) The Blackwell Companion to Social Work Oxford: Blackwell Publishing

Thompson, N (2002) Anti-Discriminatory Practice in Davies, M (2002) The Blackwell Companion to Social Work Oxford: Blackwell Publishing

International Wheelchair Day 2014: What a Wheelchair Means to Me

Today is International Wheelchair Day. It is a day to celebrate the wonderful invention that is the wheelchair, and the freedom it brings to so many people. It is also a day to think of those whose lives could be enhanced by the provision of a wheelchair, or a better wheelchair, but who, for various reasons, do not currently have access to one.

Various events are going on around the world, so take a look at the website above to see if there is something happening near you.

*****

Early on in my illness, when I could walk further than I can now, I began to think about wheelchairs. Even though I could still walk 100-200m, my restricted range of mobility was beginning to restrict what I could do. I badly wanted to go to Taize and Greenbelt in summer 2011, and I realised that if I had a wheelchair, I could.

I only began to doubt myself when I thought about what other people might think. Would they think I was giving up? Would it make life awkward and difficult? Would strangers think I was faking when I got out and walked completely normally? Would people treat me differently? I'd already heard about 'Does s/he take sugar?' when I was training to be a social worker.

I looked at a lot of wheelchairs online. I began to consider my options for getting one just so I could do my 2 trips away over the summer. It turned out that the easiest and cheapest way would be to borrow one from the Red Cross (you can borrow one for free, but they like a donation).  I really didn’t like the look of the horrible red and grey chairs on their website, but they lent me a metallic purple one with a really comfy backrest. I thought only expensive wheelchairs could look cool. One person even complimented me on the wheelchair during the trip, and was really surprised when I told her it was on loan from the Red Cross.

My husband and I picked up the chair a couple of days before the trip, so when it turned out to be lovely evening, he took me for a walk down the road. It felt better than I had ever imagined. The sensation of being pushed in a wheelchair took some getting used to, but I felt free. Free and happy and so grateful just to be basking in the evening sun.

The wheelchair I borrowed for Greenbelt wasn't as nice, but it still meant I could go and enjoy the festival. A month later, life was getting so awkward without a wheelchair, I started hiring one. Turns out, when you just get by without something, you don't actually know how much you can benefit from it until you actually have it. This has turned out to be true with several other things I now have to help make life easier living with ME. I noticed it with people I worked with too, when I was a social worker.

The only problem with the hire chair was, I hated it. With a passion. It was grey and uncomfortable. I still got so exhausted from sitting in it and I was embarrassed to be seen in it. The worst thing was that the seat sling didn't attach to the backrest so I was left with my bottom peeping out between the two. Not dignified in the slightest. Every time I looked at the chair folded up in the corner at home, it seemed to remind me of everything I couldn't do. On top of that, it was giving my husband backache because the push handles were too low for him.

So, during one of my many trips to my GP at the time, I asked her if she would refer me to wheelchair services, to see if I could get a chair on the NHS. She agreed, but I didn’t meet the criteria. There is a bit of a postcode lottery when it comes to who is eligible for a wheelchair on the NHS, and where I lived at the time, they considered that I wouldn't use a wheelchair often enough for them to provide one. Instead, they provided me with a list of local retailers where I could buy one.

I struggled on with the hire chair whilst unsuccessfully chasing second hand chairs on eBay. Money was tight - back then I thought it pointless to claim DLA as I might get better - and I felt I couldn't justify buying a new chair for the same reason.

Eventually, my husband talked me into buying a new chair from a discount site. Most of the second hand chairs on eBay were actually going for around the same price. As soon as my new wheelchair was delivered, my joy returned. It was blue (my favourite colour), it was comfy, it was dignified. The push handles were a better height for my husband. We went out in the sunshine for a picnic, and people-watched in the park. I sat proudly in my new chair, happy to be out and about enjoying myself.

But it didn't last. As time went on, we realised I was probably going to need a wheelchair for a while, and the new one was wearing out already. All the joints were loose and had to be tightened up all the time. The cushion had lost it's supportiveness. I was becoming unhappy again. I wanted more freedom.

I was beginning to hate being pushed all the time. I couldn't look at the things I wanted to look at in shops. I couldn't control my own speed. I got travel sick when my husband changed direction without warning. People saw me as dependant and wanted to do everything for me. It was difficult for me to change position when stationary.

I began, literally, to dream about pushing myself around. In my dreams it was easy, so easy I was even flying in my wheelchair. I would be effortlessly speeding through my dreams, and then I'd wake up. My husband and I started talking about a long term solution. If I was going to get myself around, I'd need power assistance. I looked at various options, but what I really wanted were e-motion wheels.

I'd seen someone using them at Greenbelt 2011, and promptly Googled them when I got home. They seemed perfect. But they were an expensive dream, especially since to make the most of them, I'd need a new wheelchair too.

But in November 2012, I received a life-changing letter. I was about to inherit enough money to buy the e-motions and a new wheelchair. I could scarcely contain my excitement. Even Christmas paled into insignificance next to my literal dream-come-true. I could barely think of anything else. I printed off the leaflet and showed everyone I knew.

In January 2013, I went to try out the e-motions at an approved mobility shop. They got me to try out lightweight chairs first, to see if that would be enough to enable me to get around on my own. It was better, but not good enough. I tired quickly just pushing round the shop. Then I got into the chair with the e-motions on, and I just didn't stop. I went backwards and forwards for ages, until the guy asked if I'd like to take them outside. Pushing myself along the row of shops, it was the furthest I'd been independently in over a year. I was sold.

Back inside the shop, we discussed wheelchairs for hours, and I chose a chair, associated options and a cushion. I also discovered why my other chair had worn out so quickly. Who knew I was wasn't an 'occasional' wheelchair user? The NHS certainly seemed to think I was!

I've had my current wheelchair for just over a year now, and it has changed my life. I am happy with the way it looks, with the way I look in it, with how it feels and how it fits and supports my body. It minimises my physical fatigue in a way that no other wheelchair I've tried ever did. It has been an enormous boost to my confidence and it has opened up my world. I can do everything I wanted and more. I've never been one for speed, but now I can 'run'. I adored dancing, and thought I never would again (unless I recovered), but guess what? I can.

And that's the thing really. A lot of people think a wheelchair means restriction. I understand why that is. If you put a non-disabled person in a wheelchair, they are more restricted than if they weren't in the chair. To those who can walk as much as they want and wherever they choose, a wheelchair is restricting.

But it isn't to me.  Today, I hope Eileen can hear me say thank you for her generous gift. It isn't just a wheelchair. It is freedom, confidence, dignity, independence and glorious possibility.

 Picture shows me, a white female, sitting in my wheelchair. The wheelchair faces a view out to sea, I am looking over my shoulder towards the camera.

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Want to celebrate International Wheelchair Day by making someone's wheelchair dreams come true? You could donate to one of the following charities, or find out if there's one local to you.

Whizz Kidz

Motivation

Wheelchair Foundation

 Red Cross

You could also sign this petition which calls for better wheelchair provision from the NHS.

ME/CFS: Places you can find out about my condition

ME/CFS, the condition I have, is one of the things that I am not going to write about very much. This is because there are numerous places you can go to find out about it and also numerous people blogging about living with it. Although everyone is affected slightly differently, I do not think I can add much original material to the internet regarding ME specifically.

However, I know that there might be some people wondering what it is exactly that I have, so I will provide you here with a whole load of links that I have gathered over the last couple of years. You can pick and choose which ones you click on, depending on how much you want to know and how much time you have!

ME charities

The following are UK charities who fund support for people with ME, research into the condition or a combination of the two. Their websites give basic facts about ME, such as what the symptoms are and how many people are estimated to be affected. On their news pages you can find out about the latest research findings.

The ME Association
Action for ME
Invest in ME

YouTube

There are lots of videos on YouTube about ME/CFS. Most of them are depressing, a lot of them are just words with sad music. Although I can understand why people with ME want others to understand how truly awful it can be, I find it difficult to see how such videos can really change people's minds about the matter. Feel free to correct me if you have seen one of these and been moved by it.

However, is isn't all bad. The two links below are the best videos about ME that I have come across, although there may be others. They are each made by a teenager with the condition, and they provide an excellent explanation of the condition and surrounding issues that people with ME may experience.

ME Awareness by Poppy

Ways to describe and explain ME/CFS

There are also various films that people are trying to make about ME (including interviews with researchers etc), but a lot of them are relying on crowd sourcing the funds, so only trailers are available at the moment.

Again, I am somewhat skeptical of what this awareness-raising will actually achieve. But on the other hand, I do believe that more research and better recognition is desperately needed. ME affects more people than, for example, MS, yet more research has been done on MS and therefore more is known about it.

Voices from the Shadows is a UK film that was released in 2011. It focusses particularly on those with very severe ME, who are often bedbound (I do not fall into this category).

The Blue Ribbon is a film in production, currently looking for funds to enable completion. It is based in the US and should feature interviews with patients, family of patients and researchers.

Canary in a Coal Mine is a very new project based in the US. It has attracted a storm of attention online and looks very promising. The woman behind it has ME herself and is very well-read on the subject. She is interviewed here on the TED blog.

ME blogs

On the right are links to other blogs I read. There is a small list of blogs about ME, but it is worth noting that some of the  people in my other blog lists also have ME. It isn't the main focus of their blogs, but there are places where they mention it.

Danni in particular has written a great piece here. Although it is long, it sums up pretty much all the important things about ME, in a way that is pretty easy to understand.

If you would like a US perspective, this is a good place to start, and there are some other US ME blogs and websites linked from there on the right hand side of the page.

Current Issues

Currently there are 2 major issues causing uproar within the ME community.

In the US, the HHS have just signed a contract with the IOM to produce a new case definition for ME/CFS. The problem with this is that it is likely that experts in the condition will not be part of the process, it is costing a lot of money and in any case there is a definition that was published in a journal several years ago that the scientific community view as perfectly adequate (The Canadian Clinical Case Definition). This definition has not yet been adopted as diagnostic critieria by any country although it has been used many times for research purposes. The view of patients and many international experts is that the Canadian definition should be adopted by the US health authorities and the money instead spent on further research.

In the UK, the National Institute for Clinical Excellence, who produce guidelines for treatment of many diseases and conditions, recently announced that they would be placing certain conditions, including ME,
on a static list, not to be reviewed often. The view of patients and the MEA is that the current NICE guidelines fall short, and in the light of recent research (and the Canadian definition which NICE ignored first time round), desperately need updating. Originally, it was anticipated that the guideline would be updated this year.

In-depth Information

If you are really keen to know lots about ME, these links are to websites which provide more in-depth information about research and the politics surrounding the illness. They are both US-based but with an international emphasis.

Phoenix Rising

Cort Johnson

So there you have it. ME in not-quite-a-nutshell. Unfortunately being such a complex, misunderstood illness surrounded by ridiculous politics, it will not currently, if ever, fit in a nutshell.

Language and Disability

I want to write about the issue of language and disability mainly for my non-disabled readers, but I also want to explain the words I have chosen to use within future posts. There are a few different opinions about certain terms, and I think it is fine for each disabled person to use whatever words they feel comfortable with. I want to share my views here not just to educate non-disabled people but also to justify my choices to disabled readers who may or may not share my opinions.

Please be aware that I do not speak for all of the disabled community. If you are not sure which words a disabled person prefers, just ask them.

Many disabled people and all social workers (I hope!) will be familiar with the social model of disability. This article basically explains the social model and why some people prefer the term 'disabled person' rather than 'person with a disability'. If you aren't disabled, I strongly advise you read the article.

It is worth saying that some disabled people do not like either term. I once watched a documentary where a guy who used a wheelchair was designing a brand new type of wheelchair, and he said that when the army dispose of a bomb they disable it, then it ceases to function. He felt as though saying he was disabled was like being compared to something which ceases to function.

Generally speaking, in the UK we prefer 'disabled person' and in the US 'person with disabilities' is the preferred term. There are also differences between the US and UK about the term used to describe discrimination against disabled people. This blog post and this one explain about that.

I am intending to use the following terms:

Disabled person/people I have chosen this because I subscribe to the social model (despite it's limitations, which I will explore another time). I will not be offended if you describe me as a person with a disability, because I do not feel as strongly about the issue as others do. But I will always describe myself as a disabled person because that is how I identify.

Disablism The word used in the UK to describe discrimination against disabled people. I am using it for the same reasons as I use the word disabled. However I do disagree with the term ableism (mainly used in the US). I feel it is misleading and I was very confused by it when I first came across it.

Living with As in, I live with ME. Yes, sometimes I suffer with it, but I do not like to dwell on that and it is not the case the majority of the time. This term also has no emotional connotations, it is simply a statement of fact.

Experience/experiencing I experience symptoms such as headaches. Again I am going to use this term as it has no emotional connotations. My experience of symptoms is never a good one (unless I am experiencing fewer symptoms relative to, say, the number I was experiencing yesterday) but it isn't necessarily bad. Often it is indifferent, sometimes even funny (I tend to fall over quite a bit and sometimes muddle up words*)

Accessible/Disabled (facilities e.g. car parking space, toilet) I will probably use these words interchangeably, but I am trying to move towards using the term 'accessible' because it is becoming more widely used in the UK and has a positive connotation; I can go there because it is accessible.

Impairment(s) Again, this is to do with the social model. An impairment is what a disabled person has; a condition, illness, or something else. There is no emotion attached, and it is a good way of talking about these things without having to call it 'a disability', because some people don't feel comfortable with that.  It is also easier to explain your access needs using this term, rather than having to explain the confusing medical names of the condition(s) you have.

Because of my impairment, I need to do X this way, instead of that way.

My impairment means I need to use a wheelchair.

Wheelchair user/using a wheelchair I vastly prefer this term to 'wheelchair bound' or 'confined to a wheelchair'. This is because there are connotations of pity with those terms, and no-one, no matter how severe their mobility impairment, is glued into their wheelchair. Someone might need a harness or lap belt for their own safety, they might spend a lot of time in their wheelchair, but they almost certainly get out to go to bed at least, even if they use a hoist to do so. More people than you think can get out of their chair and walk a bit (I can), and even people who cannot walk at all might get out to sit on their sofa or a comfy chair.

I prefer the term 'reliant on a wheelchair' if someone cannot get around without one, or describing wheelchair use as 'full-time' /'part-time' or 'indoor'/'outdoor'. These are factual statements which describe how and where someone uses their wheelchair. I am a part-time wheelchair user and I use my wheelchair outdoors and in large indoor spaces such as shops.

Non-disabled I feel this is currently the best term we have for describing people who are not disabled. I don't like the term 'able-bodied' (although I sometimes use it because I am still training myself to use 'non-disabled') because it implies that disabled people can't do things because of problems with their body, and this is in direct conflict with the social model.

It also implies that non-disabled people do not have impairments. It is possible for someone to have an impairment, yet not be disabled. My husband has dyslexia, but it now has very little impact on his daily life and he does not face barriers to normal participation in society. I was the same before I had ME. I have mild dyspraxia, but I never considered myself disabled because of it.

Carer By this I mean an 'informal' carer such as a friend or family member, not a paid carer. This is a very difficult term. I have become aware since reading disability blogs that many disabled people are not comfortable with this term, however, no alternative has been thought up as yet (please correct me if I am wrong about this). I think many carers are ok with this term, certainly the main organisations which represent carers still use the term. However, I am very aware that my husband hates the word, although technically he would be considered to be my carer. As there is no alternative, I will be using this term, although sometimes I might put it in quote marks if I am finding that it doesn't feel comfortable in a particular context.

You will have noticed that I try to steer away from anything emotional in the terms I have chosen to use. This is because, when talking about my condition, the fact that I'm disabled or my access needs, I have no desire or need to invoke emotion in the person I am talking to. It is not that becoming disabled and being ill is not an emotional experience, far from it. But there is a time and a place for discussing such things, and I have no desire to discuss them with total strangers like shop assistants when all I need from them is to tell me where the lift is.

I think that pretty much sums it up for me. I might edit to add further terms as and when I use them. If you would like some further reading on the issue of language and disability, you can find some here,  here and here. You do not have to agree with everything you read, but I encourage you to read different perspectives to aid your understanding of various points of view.

EDIT: This is another different perspective to read and consider.

*Please note: not all disabled people will find it funny if they fall over or muddle up their words. For people with communication difficulties, the experience can be quite frustrating. Also, for some people falling over means they hurt themselves. This is clearly not a laughing matter. The best thing to do is to take the cue from the person. If they laugh, it is ok for you to laugh along with them.

Apologies

I know I said that I wouldn't be posting very often, but I didn't actually intend it to be this long, especially since I've only posted some introduction-type stuff.

So, apologies. I have excuses, like I was moving house, but really I need to stop reading other blogs and get on with my own! It has also been more difficult than I thought getting my jumbled thoughts into coherant posts.

I have a couple of posts lined up pretty much ready to go, so expect to hear more from me over the next week or so.

Becoming Chronically Ill/Disabled

When I returned to work after the Christmas break, in January 2011, I didn't feel right. I couldn't put my finger on it. I carried on as usual, thinking maybe I just had a few too many late nights at Christmas.

Two weeks in, I went to Southampton at the weekend to see friends. One of them was off to Venice for a student exchange. I noticed my glands were up and knew I was going down with something. By Monday, my tonsils were feeling inflamed too, so I phoned in sick and went to the doctor, in case it was tonsillitis. My GP said it didn't look bad enough to be a bacterial infection, and that it looked like a virus that was doing the rounds. She said to take a couple of days off and then I'd be fine.

But I wasn't. I was good and took the time off, but a week later I found myself back in her office once again with the familiar fatigue having started to set in. We tried some antibiotics. We tried different antibiotics. Eventually she tested my blood again. Low vitamin D. Supplements. Still nothing. Cancer scare. That revealed that I'd had glandular fever again. An explanation for the tonsil swelling, and prolonged fatigue.

But by this time I'd been off work several months. The fatigue hadn't gone away like it had before. Other symptoms were starting to creep in. My legs often felt like jelly. Then they started giving way. My glands hadn't settled down. I began to notice that how much I did affected my symptoms. They got worse if I did too much, but I couldn't get a handle on what was too much. I couldn't understand my lack of energy. I began to get frustrated. Any improvement was destroyed because I thought I was getting better and started doing things again. Still I didn't get it.

Slowly I began noticing headaches, concentration problems and minor memory lapses. Random aches and pains, a couple of dizzy spells. And still the relentless, severe fatigue and need for sleep.

I nearly attempted a return to work, but before arrangements could be made, I caught a cold. I'd had another virus the month before. Infection after infection ensued, each one making me progressively more debilitated. After I'd had a cold, I would get out of breath just climbing the stairs. This went on for weeks. When improvement came at last, it was only small, and then another infection came anyway.

I slowly began to realise I might not be going back to work. I slowly began to realise I couldn't walk very far and needed a wheelchair. I slowly began to realise how much help I needed with stuff. I slowly began to realise I was disabled.

I had a big relapse in October 2011. I went very pale, struggled to climb the stairs again, got exhausted standing in the shower. I had to rest a lot, especially in the mornings when I struggled to function. The glands in my neck and chest were swollen and painful. My brain didn't work properly. My legs didn't work properly. My arms ached from cooking an evening meal. Months before, I had already given up most of the household tasks to my now-husband.

At last, I gave in. I stopped fighting it. I agreed not to go back to work. I applied for Employment and Support Allowance. The pressure was off, I relaxed and rested. I finished planning our wedding via email and the internet.

In the spring of 2012, I improved a little. Tentatively at first, but then it was clear I was a bit better. My cheeks had colour, I could walk a little bit further and sometimes I didn't need to rest in the afternoon. It wasn't good enough to go back to work, but I thought maybe I was getting better.

I knew getting married and moving house would take it out of me. By August 2012 I was worse again, but stable, and not as bad as I had been before. I was confident I could improve again, and planned to do a proofreading course with a view to working from home.

But as the dust settled, it was clear I was still struggling. I was constantly frustrated at how little I could do in a day. My to-do list kept getting longer. In September I got a virus, and at the beginning of October a winter relapse took me once again.

Becoming a Social Worker

In 2002, or thereabouts, I decided I wanted to be a social worker. I'd always wanted to work with children, but also wanted to go to university, as I enjoyed learning. I did one of those silly computer quizzes they make you do at school, to find out what career you would be suited to. There were lots on my list, and social work was one of them. There was also a big advertising campaign going on at the time to try and encourage people into social work. The strapline was 'Social Work: It's about people. It's that simple, and that complicated.' I thought it sounded fascinating.

I did my A Levels and a gap year working as a care assistant with people with learning disabilities. I had to delay the start of my job because I was unwell. I had a fever for a couple of days and then just felt really tired all the time. I had blood tests done- nothing. I asked the doctor what was wrong with me. He replied, 'post-viral fatigue syndrome.' He advised me not to start my job till I felt better, and that might not be for a few weeks. I took his advice and when I felt better a couple of weeks later, I started.

I went into that job completely naïve and unprepared, but I left with burning passion to make a difference to the lives of people with learning disabilities. During the year I had 2 months off with glandular fever, but I recovered well.

I had an amazing time at university, (cliché alert) growing as a person and developing a sense of professional identity. I graduated with a 2:1 in July 2008. A week before my graduation I had been offered my ideal job as a social worker in a local authority learning disability team. It was the first job I was interviewed for and the only one I wanted. I accepted straightaway.

I travelled Europe with my now-husband during that summer. When we came back, I went down with a dizzy virus. I took to my bed, then felt better after a couple of days, so I decided to do some manic cleaning of our new house. The next day, I was so exhausted I could barely think. I alternately thought, 'Food' and 'sleep'. The fatigue stuck around for a few weeks. I had to delay starting this job too. I had more blood tests. Nothing. It went away and I started my job. I thought no more of it.

For the next two years, I was more or less fine. Work was stressful at times, and I feared constantly that I wasn't a very good social worker, despite everyone telling me I was. In 2010 I didn't plan my holidays very well, and ended up working a long stretch over the summer without much time off. I also had at least 2 stressful cases, one of which involved daily phone calls due to the precarious situation. The other included a day in court (which is rare when you work with adults).

I could feel myself getting run-down, and on the advice of a locum GP, took a course of multivitamins with ginkgo. It helped a bit, but I went down with a cold/fever in September anyway. I took 2 days off sick and went back to work. My colleagues told me I looked pale and I struggled through the day. I went to my GP the next day, and was told to take the rest of the week off. I ended up taking the rest of the month off.

I went back feeling a little tired still, but this soon improved and I felt full of energy. My now- mother-in-law said she'd never seen me looking so well. I threw myself into my work, beavering away to catch up on the piles of paperwork and get some cases closed. I did well, and finally felt like I was getting somewhere. I was beginning to claw back some confidence as I felt like I finally knew what I was doing. I was looking forward to taking on some new cases with fresh challenges.

I was feeling tired by Christmas but thought that was normal. I was going to have some time off, and ended up having a lovely Christmas.