A first hand account of being back at work with long-term ill health: its joys and challenges!

I couldn’t get up the stairs…

A combination of various factors such as persistent sleep disturbance, living under chronic and sustained stress and having chicken pox as an adult, all meant that one day when I was at work for Hilton Hotels (where I was employed as a Health and Safety Manager two days a week) I was suddenly utterly incapacitated by severe pain. On another occasion, I recall standing at the bottom of the stairs, unable to go up them as my whole body felt like lead.

I went to my GP who, after a series of blood tests to eliminate the other usual culprits for such symptoms (such as iron deficiency or depression) diagnosed Chronic Fatigue Syndrome and signed me off work for a few months. I ended up being off for a whole year. After an Occupational Health assessment during which it was evident that I would not be able to return even part time, the company ended my contract.

I remained out of work for 13 years.

Although my living circumstances meant that thankfully I could initially take the hit financially, this had a considerable impact on my mental health and self-esteem.

In 2011 my old manager at Hilton approached me to see if I was interested in another part-time opportunity that had arisen. I gamely said yes as I was keen to get back to work, but it very quickly became apparent that after a few months it was too much for me to contend with. I was off work again and suffering another blow to my confidence.

In 2016, my life circumstances shifted once again. I moved to a new house and it became necessary for me to earn some money. Feeling the gap between one’s capacity for work and the need to earn money to support oneself is a very scary and overwhelming place to be. Pretty much every day I had to rest for most of the afternoon after any activity in the morning and I was debilitated with persistent and chronic neck pain which rendered me barely able to speak, let alone think clearly enough to work.

Still, serendipity shined on me and when I was visiting an Osteopath for my neck pain I realised I knew the person on the reception desk, and she said that there was a part time vacancy at the clinic for a receptionist. I applied and got the job. 

It was tough. Within a few weeks of starting, I had to negotiate a change to my working conditions as the pattern of hours was unmanageable. I was supposed to work an evening followed by an early and all-day Friday. My boss was marginally sympathetic and made some adjustments. But I was shocked at her reluctance to make concessions for me, and she was angry that she had given me the job as she said she wouldn’t have done if she had known how bad my fatigue was. Although I enjoyed the job itself, this was an additional layer of stress I didn’t need.

However, it felt a relief to be ‘back in the world’, to be part of something, engaging with the public and to feel ‘normal’ again. It gave me a new sense of identity, potency and competence. I still struggled massively with neck pain but was fortunate to be routinely given osteopathic treatments (often during a shift when the desk was quiet) which was immensely supportive. I doubt I could have done the job without this; alongside pain relief medication which seldom actually really helped much but gave me a caffeine/codeine boost to artificially charge my energy to perform the role.

After two years, I realised that I needed to do something else, as engaging with the public daily (sometimes answering the phone over 60 times in one day) was too demanding. This was supported by my attendance at the NHS CFS/Chronic Pain service in Bristol which I was fortunate to be referred to. My therapist there helped me to determine what kind of activities were high, medium and low demand. I realised that engaging with people is, for me, a high-demand activity.

I went for several interviews and managed to get to the final shortlist for all of them. It was stressful having to disclose my chronic ill health in a way that meant it didn’t damage my chances of getting the job. Fortuitously, the opportunity to work on a self-employed basis with Vitality360 arose as a Business Support Manager (15 hours) and I leapt at it even though I was unsure how it would be to work from home. 

I found it extremely difficult to be in the place of the ‘newbie’ and I had to work a lot with overwhelm for the first 6 months as I struggled to learn and to increase my confidence in my capacity. But it soon became apparent that the company were immensely keen to ‘walk the talk’ of their values and to support me to be able to work as I needed to (as you would expect given their line of work). Being in a culture where the challenges of working with a fluctuating and unpredictable health condition are understood has been extraordinarily supportive. It’s easier being self-employed as I can really engage in self-management and manage my time in response to my health and symptom management. Some days I sit down to work and I can’t get my brain to function, so I go back to bed or do a different activity and then engage at a different time, sometimes into the evening or weekend. Other days I just fly. It’s always about managing the balance between rest and activity.

Working from home also brings benefits of being able to control the environment (lighting, layout, ventilation etc.) which is also very helpful to self-manage which maybe more of a compromise in an office environment with others. One of the other aspects I find it useful too is to be clear with my colleagues about, are things like needing decent notice of deadlines as stress is very detrimental and this enables me to manage the expectations of my role better.

I would be overstating it if I said it was much easier now as it isn’t. I must still invest a lot of emotional energy into maintaining a positive mental state and keeping robust and resilient. It’s really depressing to be struck down and rendered unable to work by a symptom flare up (as I did last week) as there is nothing that can be done about it. Working for an understanding and informed employer helps immeasurably to appreciate the unpredictable and invisible aspects of such a condition.

I draw comfort from the fact that in the last three years of being in work my general trajectory in terms of capacity has been on a steady increase. It’s just that it’s not linear and it dips up and down all the time. I now need to obtain more work, as my circumstances change, and this is bringing up doubt and a lack of self confidence again. It’s a tough thing to work with. And it is possible too. I never dreamed three years ago that I would be able to work, never mind manage the responsibilities that I currently have in my role. I also didn’t anticipate enjoying my work so much, and this is crucial in terms of regaining confidence and general mental and emotional wellbeing.

Written by Katherine Sewell