Speaking Out…

Working With MS

Four out of five people with MS become unemployed within 10 years of diagnosis.

One in four people with MS of working age are employed, compared to three out of four of the wider UK population. 

Shocking facts, considering MS is the most common neurological disorder among young adults and is most often diagnosed between the ages of 20  and 40.

With this in mind, and my experience of having been sacked after my own diagnosis, I attended the ‘Working With MS’ conference organised by the Multiple Sclerosis Society Cymru in Cardiff on Saturday. My leg was still excruciatingly painful so I took a walking stick, dosed myself up on painkillers and put a brave face on.

I had been invited to sit on a four-person panel of people with varying experiences in the workplace and we would each talk about how MS had affected our work. I’m not a public speaker by any stretch of the imagination and I was panicking. I used to hate standing up in school to talk about ‘What I Did On Holiday.’ I go bright red in the face, completely forget what I’m talking about and start gibbering nonsense.

I needn’t have worried, it went well (I hope). I am passionate about encouraging people not to accept bullying or discrimination at work. I was bullied for over a year, a sustained campaign to force me to resign. When I didn’t, I was sacked. I was coping with this alongside going through the whole MS diagnostic process and the combination of the two nearly drove me over the edge.

It was without a doubt the most difficult and soul-destroying time in my life and I don’t want anyone to go through what I did. With incredible support I started tribunal proceedings and won my case.

The conference was an excellent source of information, but we still have a long way to go to encourage people with MS to stay in work, to ask for adaptations and to educate employers. We have a lot of talent between us and it would be a travesty to let that go to waste…

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15 thoughts on “Speaking Out…

  1. Julie says:

    Thanks for posting about this, I am pretty much in the dark when it comes to employment rules these days.
    I have been a ‘stay at home mum’ for 16 years. My long term plan included going back to work when my youngest started senior school. That was Sept 2012. June 2012 was my first relapse. I have had more since then. I was already using sticks due to advanced arthritis in my hip following an accident. 2011/2012 was spent taking GCSE’s to show motivation and a modern education on my cv ready for a new career. I achieved all A’s and decided to do something with physics/maths.
    The cost of everything has risen so much we can no longer survive on one income. We haven’t had a holiday in 5 years, or changed the car for 10 but that’s ok, being there for my kids was more important.
    Now though, just to make ends meet I need to go to work, but I think the chances of me being offered a job are zero. With so many applying for each position it will be very easy for employers to discriminate against all kinds of people. I have no experience with the modern work place. I was wandering if you would have any advice for someone in my position, or perhaps there is someone I should go and talk to about getting back to work.

    • stumbling in flats says:

      Hi Julie,
      It’s so difficult, isn’t it? I was in the middle of re-training for a new career as my son was getting older and now MS is in the equation, that’s been shelved and I’m still looking for a new job.
      There’s loads of help out there – first and foremost the MS Society and MS trust have a lot of information. http://www.mssociety.org.uk/employment is a good place to start.
      Also, the Careers Advice Line is good – 0800 100 900.
      Another great source of help is to get yourself a Disability Employment Advisor – call your local jobcentre and arrange an appointment. They give 1:1 advisor support, disclosure advice (very important!), interview tips and also help to search for suitable vacancies.
      Perhaps try to start volunteering somewhere, in a sector you are interested in to build up your CV? Even just a few hours a week can make a huge difference and you get to learn new skills as well as having volunteer experience on your CV!
      Let me know how you get on?

  2. Hello,

    Please ask Julie if she could send me her contact details. Her plight is similar to so many other disabled people.
    If possible I would like to highlight these sort of problems on my website (www.aid4disabled.com) through an article.

    Your article and her letter are highlighting an increasingly common issue. There are times when I wonder what’s going on. Too much is done for the cheapest price and no account is taken of experience in so man jobs

    • stumbling in flats says:

      Hi Patrick,
      I couldn’t agree more. Why should people with MS give up work after diagnosis? It makes me so, so angry. With only a few (if any) adaptations, we can stay in work for far longer.
      I’m struggling to find a new job at the moment, despite being highly qualified, which is why I’m working for a friend but that can only last so long (it’s not exactly the sector I’m trained for!).
      Julie, if you’re reading this, please get in touch with Patrick! He has a wealth of information.

      • Julie says:

        Thank you both, and I will contact Patrick. I do feel that, disabled or not, our best chance of earning some money is to figure out where our skills lie and try and generate some income from them ourselves, if we can.

        • stumbling in flats says:

          Hi Julie,
          That’s great! And you’re right – we need to focus more on what we can do and worry less about what we can’t.
          I guess my dream of becoming a trapeze artist will remain just that, lol.

  3. I wanted to be a steam train driver, look what happened there.

    I’m talking at Guildford for MS Society on Sunday if you are around – love to meet either of you. Also I go down to Cardiff occasionally, my brother lives in Penarth.

    Keep in touch,


    • stumbling in flats says:

      Hi Patrick,
      Sadly, I won’t be able to make it to Guildford on Sunday, but if you’re ever in Cardiff it would be fantastic to meet up!

  4. this was a good informative post…it is a shame when talented young people cannot work with this MS thing. I feel the same about public speaking

    • stumbling in flats says:

      Hi Kim,
      It sure is, and we’ve just got to keep campaigning louder and louder until we’re heard! It really is quite astonishing that this still happens in this day and age.
      I also surprised myself that I was able to sit in front of everyone and speak without my mind going blank, lol!

  5. Hooray for your speaking engagement! I’m SO impressed that you are such an advocate. Wish, of course, that you hadn’t had that awful work experience.

    p.s. public speaking is a horror. I, too, get the hot, red face!

    • stumbling in flats says:

      It’s a funny thing. I was soooooo worried beforehand, but once I got speaking, everything just flowed. Probably because I was surrounded by lovely supportive people. It’s definitely a topic we have to keep highlighting. It still happens…

  6. fairlyairyfairy says:

    I had a similar issue at work but it wasn’t my boss, it was bullying by colleagues led by someone in a senior position. It made me very depressed especially as my boss wouldn’t acknowledge it was happening and kept blaming my low mood on my diagnosis – which was infuriating! My stubbornness kept me there and 2 years of therapy later, I couldn’t care what “they” say or do. I’m good at my job and I love it so I will carry on as long as I can.

    • stumbling in flats says:

      That’s brilliant to hear! Can’t believe they blamed your diagnosis.
      Very good to hear from someone who has succeeded in staying in the workplace, despite all the bullying.
      I had to rebuild my self-belief after being sacked and I don’t think I’m totally there yet. Bullying cuts so deep when it happens at work. Not everyone realises how hard it can be.

  7. Lee Fraughton says:

    There is no known cure for multiple sclerosis. Treatments attempt to return function after an attack, prevent new attacks, and prevent disability. MS medications can have adverse effects or be poorly tolerated, and many people pursue alternative treatments, despite the lack of evidence. The long term outcome is difficult to predict; depending on the subtype of the disease, the individual’s disease characteristics, the initial symptoms and the degree of disability the person experiences over time.””^’

    Stay in touch

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