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Posts Tagged ‘Working With Chronic Illness’

As well as living with Still’s Disease, over the past couple of years I have also developed a condition called Hidradenitis Suppurativa, due to being on Prednisolone for so many years. Hidradenitis causes swelling, abscesses and leaky channels to the surface of the skin, particularly around lymph and sweat glands (lovely I know). Last August I had a procedure to remove the worst affected area in my left groin, a procedure that took a long time to recover from, since it means leaving an open wound to heal. Eventually though, it did heal and I was just left with a neat scar. The surgeon wanted to do the same procedure on the right side, but it seemed to settle down, plus I became so poorly with the Still’s that it wouldn’t have been possible until now anyway.

But now, I do need it doing. With the reduction of the Prednisolone the right hand side has flared up again and is swollen and sore with some drainage every now and again. Even the left side, below my scar and previous site, is tender.  I think this is what happened last time too – that my HS flares seem to be related to reducing the Prednisolone, although I’m not sure why that would be. So yeah, I should really have it seen too. The difficult thing is that I have been through so much illness this year and am just starting to feel pretty good, with lots of positive things happening in my life, that it is hard to make the phonecall to arrange the surgery and put myself back into the ‘sick’ role 😦 I was really lucky last time; as horrendous as the wound looked, it was never extremely painful and I had minimal infection. This time could be different and could set me back. There are risks as with any surgery.

The other thing is that I want to aim to go back to work in September, so I would prefer to get it done sooner rather than later, as I do not want to have to take time off for something else (did I mention I already need a procedure to take two wisdom teeth out?!) At the same time, I remember the discomfort of having an active HS site when I was last at work – that was not easy either. Plus, if the site becomes infected, it will jeopardise my Infliximab treatment and that’s the last thing I want.

There is so much to consider, so I’m giving myself this weekend to mull it over and if I decide to go ahead with it, I’ll phone on Monday.

What would you do? :\

L

Edit: I just reread the HS information on the above link and strangely, Infliximab is one of the suggested treatments so in theory I shouldn’t even be having this flare of it.

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I wanted to get back to writing about some topics that are important to us all and work seemed a good place to start, since it is one of the major concerns to people when first diagnosed with Still’s Disease. It’s also something I’m having to seriously think about right now.

I want to start on a positive note by saying that it is definitely possible to work when you have Still’s Disease – a question I get asked a lot by the newly diagnosed. Of course, you first need to find the right treatment plan to control your Still’s and this can take longer for some than others. Every individual case of Still’s is different and people’s ideas of work are different too, so there are a lot of factors at play; but, generally speaking, it is possible. And not only is it possible, it is beneficial too.  Work can provide the Still’s patient with exercise, stimulation, friendship, confidence and a sense of achievement, all of which help to combat elements of depression that often accompany chronic disease.

But that’s not to say it is easy.

When I was younger and people asked me what I wanted to be when I grew up I would answer ‘a vet’ or ‘a doctor’ or ‘a journalist’… all very different but all careers. I was bright and had no doubts that I would one day have a good career, earning a decent wage. Half way through high school though, when I was struck again by illness after a long period of remission, this all changed. I stopped aiming for careers and simply aimed at being well enough to work a job, any job. I still went to university and even gained a first class degree, but I never felt that I would realistically be able to manage the pressures of a career.

I still don’t know whether I was right to give in to Still’s in this way and it’s not something I’m advising either. I know some people would argue that you can overcome disability and shouldn’t let it get in the way of your dreams. Usually I’m one of the first to claim as much, but a big part of me thinks I’m just being realistic in this and allowing myself to work around the Still’s rather than having it knock me back constantly. And here is why:

Studying was easy enough – I could pace myself and work around the bad days; rest when I needed to; struggle through an hour lecture, when feeling ill, knowing that I could catch up on my borrowed ‘spoons’ the next day… But even the most tedious working day is structured and (mostly) unbendable.  If you’re late to work because you really needed that extra half an hour to get on top of your pain, to shake off the stiffness in your joints or simply to catch up on sleep, is your boss really going to be amenable or could you find yourself facing disciplinary action? And when are you going to catch up on all those ‘spoons’ you lost ploughing through the bad days to reach targets and deadlines? There’s a good chance that all those borrowed ‘spoons’ are going to keep piling up until, one day, they come crashing down around you.

Which is exactly what happened to me at the start of this flare.

I was fortunate enough to find a combination of medication that controlled my Still’s symptoms and I took the risk of accepting a fulltime job. It wasn’t a career exactly, but it was a job that I enjoyed and it felt fantastic just to be working. Things started off well and I managed fulltime hours for about two years, but slowly more and more symptoms began to come through and I was spending all my spare time trying to fight the fatigue or sleeping to catch up on all the borrowed energy I was surviving on at work. Soon, even that wasn’t enough, and I kept on deteriorating until I ended up in hospital.

I know that working fulltime wasn’t completely responsible for this two-year flare from hell, but it sure didn’t help and it has made me aware of how much harder it would be working in a high-pressure career. My job was relatively easy and stress-free, the type you could leave behind at the end of the day, unlike most careers. That makes me think I made the right decision to change priorities back then; that I wouldn’t be able to manage a career as such. But knowing something, doesn’t necessarily make it easy to accept and I’m often tempted to change my mind.

Anyway, I am now at the point in my rehabilitation where I can actually consider returning to work at some point in the near future; this time working part-time hours. I had hoped to return to my previous job; I still have a contract with them but, even so, it seems they are reluctant to take me back on, knowing my medical history and having experienced my ‘shortcomings’ first hand. It will go before a board of governors, who will make a final decision in the next couple of months, although I’m not expecting things to go in my favour.

Which got me thinking – would it be better to find some business venture that I can pursue on my own terms rather than searching for employment again? I have so many concerns about working for an employer when I have an ongoing medical condition, now that I have experienced ‘the system’. I’m sure these questions are the same for a lot of people so I’ll make a list (or two):

Returning to a Previous Workplace:

  • Will my employer and/or work colleagues treat me differently? Will they lose the respect they had for me before I was off sick? Will they hold back on giving me certain responsibilities because they worry I will have further prolonged absences in the future or that I cannot cope with them physically? Will I fit in with them on a social level or will I be treated as an outcast?
  • Will my job be at risk? Will there be more chance of me losing my job to funding cuts than others, because I am now seen as disposable or a liability? When it comes to such decisions, most employers would surely choose employees that are healthy and won’t require the additional costs of covering absences of ill health.
  • Will there be resentment towards me?  Will my employer feel trapped into employing me because of legal legislation in the disability act? Will colleagues feel I don’t pull my weight or that I receive special treatment? Will they begrudge me the time I need for hospital treatment and doctors’ appointments?
  • Will I be able to manage my previous working hours and workload and what happens if I can’t?  It is impossible to know what our bodies are capable of after such a prolonged period of illness, until we actually try. Therefore, it is impossible to make promises or commitments, even with a phased return. What happens if I realise something just isn’t going to be possible?
  • Will they provide adequate support? It can often look great on paper but I need to make sure it translates into reality too.
  • Will I still be considered for promotions?  Or again, will I now present too much of a risk to put further trust and responsibility in.

Finding New Employment:

  • Should I tell my new/potential employer about my disability / medical history? I have always been honest about my Still’s Disease in the past, but this is the first time it has gotten in the way of my employment significantly and seeing people’s reactions to it makes me wonder if it would only disadvantage me.
  • How do I explain my previous absences from work to potential employer? Knowing that there is every possibility it could happen again and require them to fund cover and/or sick pay? Surely this is going to put off every employer from employing me and yet it would be wrong to lie? Some people use this factor to whittle down the number of applications, without even looking at the rest of the qualifications, no matter how brilliant!
  • How do I know that I will be able to manage the duties and responsibilities? As above, it is difficult to know what our bodies are capable of and this is bound to be more difficult without a ‘gradual return’ to work, where there is awareness of my medical background (and hopefully some support).
  • How much do I disclose to colleagues about my limitations? On one hand I don’t want people expecting me to do things that I can’t manage, on the other I don’t want to seem incapable. Plus, again, I want to be able to fit in and hopefully make friends.
  • What happens if I do struggle or if I need to take time off work due to ill health?
  • How will I manage the pressure of potential absence that having an illness puts on me? It’s not just the physical side of the illness we have to do deal with, but often the psychological effects too. Knowing that I may struggle, need time off work, etc in the future can be quite stressful in itself.
These are just some of the questions I can think of right now, but I know there must be many more. I’m sure that anyone who has considered employment or has had to have time off work because of their Still’s Disease will recognise a lot of them. They may sound very negative, but in my experience they are realistic issues that we need to think about. Unfortunately, despite Disability and Equality Acts within the workplace, many employers do not want to employ people with complicated medical backgrounds and histories of prolonged absence – we are a financial burden.

Despite this, my gut feeling is that we should be honest with potential employers, at least in the later stages of the employment process (when they have already seen how brilliant we are!). This means that if you do struggle or need time off for appointments or due to a flare, then they can show some sort of willingness to support you. Otherwise, if it did come to a flare of your illness, there may be some resentment that it hadn’t been mentioned in the past, that they weren’t given the chance to support you or simply that they wouldn’t have made the same choices with that knowledge, as wrong as that may be. Plus, surely keeping something like this to yourself is going to fester inside you and just create additional stress that you don’t need? That’s my opinion anyway.

If returning to your previous job after a prolonged absence, it is important to get the right support in making that transition back into the work place – both physically and emotionally. Most employers in the UK are entitled to provide support to employees with a disability and Still’s Disease is covered by the Disability Act here. Help that has been suggested to me by Occupational Health so far has been: Transport to Work through Access to Work; Alterations to my workspace to ensure my desk, chair, computer etc are all positioned correctly and comfortably; Voice recognition software to limit typing time, hands-free phone headsets, relocation to a different role if necessary, workplace assessments to see if any other adaptations could be made to make my working life easier… and so on.

Even more important though, is finding work patterns that fit around your Still’s:

  • Suitable hour – Working part-time is an obvious option, but how are these hours broken down – across two days or in smaller chunks throughout the week; which suits you best?
  • Suitable times of day – Maybe afternoons are easier for you than mornings; this needs to be taken into consideration too.
  • Suitable days – you may not be up to much after taking medications such as Methotrexate early on in the week, but much better later on in the week.
  • Appropriate breaks – Both ‘tea breaks’ within your day at work and time off in between working days, to give your body chance to recover its energy resources.
  • Opportunities to alternate between sitting and standing throughout your working hours if possible, to make sure joints aren’t over-stressed but also that you don’t seize up either.
  • Some people may prefer to leave work behind at the end of the day; others may like the opportunity to be able to pace themselves by being able to take it home with them.
  • Think about traveling to work and distances / effort it takes getting there; are there any options to work from home if necessary?
  • Try and find a job that gives you plenty of chance to rest and pace yourself, with minimal stress; perhaps something you can even enjoy!

It may be that these terms & conditions rule out the high-flying, high-paying careers you dreamt of once, but surely your health is more important? If you think you will struggle financially, see what benefits you are entitled to supplement your wage with.

So, to round things up. You can have Still’s Disease and manage to work and it is beneficial to do so, but you may have to make some changes and sacrifices and it isn’t always going to be easy. You will always have an extra workload from the Still’s itself and that can be quite the pile!

Pace yourself,  keep stress to a minimum and get support from others and you should be okay.

Good luck
L
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Useful Links:
Working With Arthritis (Arthritis Care)

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