Continue to work or not ?

Hello I would really like some advice please. I was diagnosed in 2011 with CA, over the years my health has got worse not only with the Ataxia but with depression, even considered suicide as really scared of my future. I only work 3 days a week now with rest days in between but this is getting harder each day. I am 42 so still have to work financially but when do you make that decision that my health is more important than money? Wendy Girl xx

9 Replies

  • Hi wendygirl :) Sorry to hear you get soo sad sometimes :( What do you do for work? Deciding to give up work is a tough decision. Is it possible to talk to your employer?? (Even about your fears) Definitely have an appointment with your Dr/GP and tell them about your fears ~ sometimes other people see or know of solutions. For me my body made the decision for me (highly stressful physical position in the restaurant industry) I fell one night and ended up in bed for months wondering if I would ever walk again, :( At least that episode "was the straw that broke the camels back, so to speak" and led to me finally being diagnosed with Episodic Ataxia. I now have retrained and work for my partner a few hours a week doing Energy Assessments on a computer, unbelievably boring but at least still some work, he can see if today I'm well enough or not! I'm 46 and can walk agin (very slowly) Upside for you is that you know whats wrong :) :) :) (I couldn't stick up for myself because I didn't know what was wrong! ) You've made the fabulous decision to start talking here :)

  • Hi there Wendygirl,

    I empathize w u. Work is tricky it and giving it up is a tough decision as Joolzzz noted .My advice (which I did not follow unfortunately): Stick to it for as long as possible as it might help with your feelings of gloom and worry among other things; you can always quit. Maybe you can do something easier if you choose to share events w your boss. I think it is illegal to fire or punish someone for a disability. Good luck whatever you choose to do. N

  • Hello wendygirl, this is a tough call and one that only you can answer for yourself . For me I worked only 12 hours a week when my condition worsened ( always worked full time) the main reasons were to keep my mind & body active and to have contact with others . It would be so easy to give up not just work but yourself. Personally if you really need to give it up for health reasons then find a hobby / interest to fill your day as suddenley you mayfind yourself without a purpose. Good luck with your decision x

  • Hi Wendygirl , You are having a difficult time with obviously lots going on. Regards your work, what is it that you do ?, can you safely do your job? . Do you have a pension that will allow you to take medical retirement. The reason I ask is that is the situation I find myself in and I also am 42. With your depression and you mentioned suicide its really important to seek medical help . Have you seen your GP and told them how you are feeling? . They are there to listen and help you and may be able to offer some advice with work. Kind regards x

  • Hi Wendygirl, Yes I can understand this is a real dilemma and as others have observed, your ability to keep going may depend on what sort of work you're doing. You should be covered by the Disability Discrimination Act which means that you shouldn't be punished for problems caused by your ataxia - on the other hand you are still required to be able to do the job.

    But, your employer is required to consider what 'reasonable adjustments' can be made either to your duties and/or your working environment and some adjustments might make it easier for you to continue. What is 'reasonable' will depend on what your job is, and the circumstances of your employer - they don't have to make adjustments if they can show that they wouldn't be viable for business reasons. See for a more detailed explanation.

    However the Access to Work scheme will pay a percentage of the costs to enable established employees with a disability to have reasonable adjustments made. My understanding is that Access to Work may even pay the costs of a cab for you to get there if public transport is no longer viable for you. See - the bit about employees who've been in work for more than 6 weeks is in paragraph 3.

    I hope this is helpful. Do contact the Helpline if you need more assistance with this. Best wishes Sue

  • Dear Wendygirl, Other's advice is wonderful, so it's hard to add anything to what's already been said! It's a personal decision to stop working, I can only give you my experience. I worked for 28 years as a social worker. I started having symptoms of ataxia and had to medically retire after three years of working with my ataxia, as my symptoms were becoming much worse. They caused me much stress in an already stressful job, which didn't help my symptoms. But, this is your call, depending on what you do for a job and what symptoms you have! Also, I take an anti-depressant (have for years, originally for another reason), which has really helped with the sadness of having ataxia. Therefore, I've not worked for ten years now and was originally diagnosed with my ataxia twelve years ago, although I had very minor symptoms starting about eight years before diagnosis. I'm sure you'll make the right decision for yourself! My best to you..., ;o)

  • Hi Wendygirl

    I was diagnosed with cerebellar ataxia at the age of 15. After going to University and working for 10 years, I retired on medical grounds at the age of 36 (nearly 4 years ago). As Sue mentioned above Access to Work provided a cab to and from work for me and I needed various 'reasonable adjustments' throughout my working career. However it was becoming more and more evident that I was really struggling with work (my colleagues noticed a long time before I actually acknowledged it) and there were no longer 'reasonable adjustments' my employer could put in place to make my working life easier. It wasn't until I stopped work that I realised how much work was affecting me and I can't tell you how much better I felt not working. I have no regrets whatsoever about my working life or the decision to take early retirement. What was especially important to me is it was completely my decision to retire, nothing disastrous had happened and I wasn't forced to stop working.

    Of course money was an issue but I was fortunate in that I got/get an occupational pension (I was a doctor). My income now is about a third of what I was earning before I retired but as my wellbeing is so much better, it has been completely worth it.

    Look into the benefits/any pension you would be eligible for. In my opinion and after personal experience health is always more important than money.

    Good luck with your decision. It is a very difficult one. But please make sure you do what is right for you.

    Best wishes


  • Hi Wendygirl. People have given you some great advice. I have a few additional thoughts, though. I have been in, and out, of treatment for depression for many years. I was always told that the minute that I felt that my depression became severe enough that suicide might have become an option for me, I needed to see a mental health professional immediately. First talking to your family doctor, who might not know exactly the drugs you need, or where you might go to assure your safety,

    could produce a dangerous delay in getting you help. It also seems to me that you could benefit from talking with some type of Job Counselor. There could be other jobs that you could be qualified for now, or maybe after a little bit of training, which your Ataxia might allow you to do. Like, for example, work from home jobs. It might be good if you could find something that you could do later on, if you get tired of not doing much, not having the type of income that you need, or not accomplishing as much as you would like to. After letting Ataxia to keep me from working for the last ten years, that is the place where I am at now, and it is very hard to find any kind of job after you have been out of working for so long. I sincerely wish you all the best!

  • Thank you all for your advice 😍 Things have changed since I wrote on here, I am now signed off sick from work and because I was on a capability part 3 the next step is dismissal so I am researching my rights and what I maybe entitled to. Wendy Girl xx

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