May's Blog - Debbie's experience of working with lupus

Hi everyone. This months blog has been written by Debbie. She has shared her experiences of working with lupus and how her employers have helped her. Thank you so much Debbie for taking the time to write your story for us.

When I was first diagnosed with lupus I buried my head for a while thinking, “If I don't tell anyone, it isn’t real” (silly, but there you go). I used to get a lift to and from work, so in a way my symptoms were more controlled, slightly hidden even, although the fatigue was still prominent! The person who I caught a lift with left unfortunately, so I now catch the and due to this my symptoms have been getting progressively worse. With the earlier leaving time in the morning and getting home later, not to mention the walking to and from work etc. my fatigue had getting worse and I was getting severe pains in my legs, so much so that walking was becoming harder. I decided it was time to speak to my manager and to a few of my closest friends, as I realised I was not helping myself by not doing this.

It was almost a weight off my mind afterwards and I was glad I took that step! I spoke to my manager, as I had made the decision to reduce my working hours. I was not coping well with the fatigue and muscle pains and I felt reduced hours was a good start in helping me adapt and cope better. I was worried about doing this as in a way I felt a bit of a failure, like I was less than I was and I worried that perhaps my employers would think I wasn't up to the task. It is amazing what worries and thoughts enter your head with something like this and it doesn't help that I am a gold medal worrier anyway. At present I work Mon - Thurs 8.30am - 5pm & Fri 8.30am - 1.30pm. I decided to ask for a four day week, so I could work four days on, three days off and to finish at 4.30pm so I can arrange lifts home, as at present I am spending a king’s ransom on cabs to get up the hill. Ideally I would prefer to go part time but financially I am unable to do this at present. My manager listened, made notes and agreed to discuss the issue with HR before a decision was made.

I was sent to Occupational Health for an assessment. I was a bit worried as I wasn't sure what to expect and I was concerned that Occupational Health were more for the company than the person. How wrong I was! The lady I saw was lovely. She helped put my mind at ease on a couple of points; one of which was that I was really concerned that work may try to get rid of me because of my lupus, but she explained about the Equality Act and how the employer walked a very fine line when dealing with a disability, so it definitely helped ease to my worry there.

Work met me more than halfway on my request. They agreed to reduce my finishing time and due to this I have managed to arrange a lift home with a colleague, which will help greatly with my fatigue and muscle aches at the end of the day. I also have been granted a day off in the week so that my working week is broken up. In addition, they have also said, if I need a rest break during the week I only have to mention. They have agreed to trial for three months to see how we all get on but all in all positive steps.

The LUPUS UK blog will return again next month with more people sharing their experiences of working whilst living with lupus. If you would like to share your story, please email paul@lupusuk.org.uk

If you need more information about support in the workplace for yourself or your employer, you can download or order our free employment guides from our website at lupusuk.org.uk/living-with-...

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  • Hi....that is so good to hear and must be so reassuring for you. I hope that all continues to well for you and it's great that you have been able to continue with work. I wonder if the bigger companies and local authorities that have occupational health in place proves a bonus as they are there to help. I guess it might be the smaller companies that are unable to offer such a good service or does anyone know otherwise? Either way very pleased that this is working and it shows the help that can be available if we just ask xx

  • Knowing what I deal with on a daily basis, adding to that the thought that I would have to get up early each day for work makes me realize just how fortunate I am to be retired! I can rest whenever I need to and that has helped tremendously! For those who have this disease and work, all I can say is Bravo! Keep up the good work!

  • I found OH really supportive and have helped me come to accept that l have to give up fighting the fact that l am no longer able to work....now working with my union to sort early retirement.

    It feels easier not starting every day dreading the immobility of chronic fatigue ....and if it takes 2 hours to get up showered, dressed and ready to face the day then thats what it takes

    My thoughts are with those who are having to work...and in the sunshine that brings another range of symptoms to adapt to

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