Chronic Fatigue and Benefits

Hi Lisa

CFS/ME is covered by The Equality Act 2010

It does not matter on the size of the company they have to comply with the law. A single person has to comply with the law so do not worry too much just yet. If they continue to dismiss your condition reference, the act to them as you can sue the pants of them. ME/CFS is now re-classified by world health org. as a disease not just a condition.

I manage to just about work… it’s a uphill struggle 90% of the time  but it’s only with cooperation of my employer that I have been able to carry on to some degree.

You need to contact Access to work it’s a government department as they will arrange to visit you and instruct the employer on the changes they have to make to accommodate you in the work place. (There is funding available to them to cover any recommended purchases)

Please don’t just give up your job and leave due to the employers ignorance of ME/CFS, you can educate them and have things put in place to support you in work, like working from home and flexible starts etc.

I now have a private ground floor office with wheel chair access with a very comfy leather recliner to rest in as and when I need to during the working day! The employer knows I want to work and with the help put in place they get their two pennys worh out of me still.

I have had ME for over 20 years now, and I have given up a few good jobs because of it. Its no fun beinng unemployed with ME as a new employer doesn't really want you because of the ME/CFS. However, a current one has to make changes for you...

All the best.

Yes it could be worth me applying for PIP. However I guess part of my own reservation is the enforcing of having the label of CFS and the worry of not being very employable with the label. You are really young and hopefully  things will improve for you soon. I think the income support top up is worth a try as you could get that now as well as SSP. 

Hi Lisa, you have already been been given some great advice. If/when your Ssp runs out you can get Employment Support Allowance. You may also be able to claim some element of this if you go part time for a while. The CAB/Access to work would be able to advise you about this. I would urge you to speak with Access to work and get them to work with your employer. I wish I had known about them when I was working. I think from looking back on my own experience you need to remain positive and professional with your boss. Try to put suggestions to him which are generally beneficial to him. Could you suggest that they take on an apprentice? If you were to reduce your hours (40 hours is a lot) and work with an apprentice he might find that the company is better off financially, but also covered if you have further sick time. If he allows you to work from home occasionally there is less risk of work not being finished.

At 20 you should be thinking of building a career and I know how hard studying to be an accountant is whilst fighting this illness, but it is possible but only if you have a supportive employer. If he allows you to study on day release for instance and you have an apprentice you will be able to take on more you your bosses work taking some of the pressure off him.

Obviously you will have to adapt the suggestions to your own circumstances.

Next time, your boss is rude about your illness, remind him that it is a recognised disability and you would ask that he be respectful about it. Again, in my experience, you should document all conversations you have with your boss about your illness. Do this in the form of an email to him with the points you raised and his response.The point being that if you have no HR he will not really have a clue what he is doing and may feel that as you are following a formal approach he will have to lift his game.

With CFS being a disability companies are obliged to look into reasonable adjustments for you, however, the test of reasonableness is what they consider reasonable, not you or Access to work. I work for one of the biggest companies in the world and they would not agree to all the reasonable adjustments my specialist suggested.

If you get nowhere after all the advice on this forum I would look for the biggest employer in your area and target getting a job with them as you should at least get better sickness benefits and a degree of support.

Hope this helps a little.

The problem for Lisa is that if she gets a diagnosis of CFS then if she applies for a new job and the company request a medical form to be filled in she has to disclose it. Now we all know that she should be treated equally but she won't be and she is right, she is making herself unemployable unless she has a skill which is very rare.

A friend of mine recently got a new contract job and he had to disclose how much time he had off sick. He manged to persuade them it wasn't a problem and they employed him, but I bet it was because he was on contract so they could easily give him 1 months notice.

The problem is that the cost to an employer of you being off sick for any long period of time is huge and most companies in the private sector don't want that liability.

What I did was not to tell anyone about my condition and tried not to let it interfere with my work. When it did I made people aware but took it as an opportunity to work for myself so I could control when and where I worked.

I feel sorry for you because it has hit you at the worse possible time. I would suggest that you seriously start pacing and as a minimum I would go to work, come home and then rest until its time to go back to work. At the weekend seriously rest to try and get those energy levels back up. Do you get an hour for lunch? If so, is there somewhere you could go and lie down for 30mins, you could tell them you are practising meditating!!  Part of my pacing use to involve lying down on a yoga mat for 30mins doing absolutely nothing.