Working with Behçet’s
By Rebecca Hyder, Support Coordinator Birmingham
What do a therapeutic radiographer, a firefighter, a head of UK training and development, and an employment advisor have in common?
You’ve guessed it – they all have Behçet’s disease. Many people who have Behçet’s disease are able to work, and they have as wide a range of jobs as anyone else, but in order to manage their working day, they might have to make some tweaks and do things a little differently. I asked four of the Birmingham Centre of Excellence’s working patients about how they manage their working life. Working with Behçet’s disease, in their words…
What are the benefits of work, for you?
“Work gives you a goal and something to get out of bed for. I can’t control the illness but I can control how I feel about it.”
“I enjoy the routine of being at work, and not feeling like I’m defined by my Behçet’s, and am still able to make a contribution and give back. I really enjoy the patient contact aspect of my job and being able to help others improve their health. I also enjoy the social aspects of work and being with others who I get along with.”
“I love my work and would be lost without it. It boosts my self-worth and self-confidence to know I’m making a valuable contribution and it pays the bills! It’s also my favourite form of distraction therapy for pain management. Being totally engrossed in my work means I’m not paying that much attention to painful joints or ulcers and means I cope better.”
“It is a great distraction and motivator for me. When I was unemployed I felt like I had no purpose and I was insignificant. Now I am part of a successful team that value, appreciate and rely on me. That is a nice feeling.”
Does having a diagnosis make a difference at work?
“I think so, although it’s not as useful as a diagnosis people have heard of and can pronounce! I always end up explaining it if I need to tell people about it, but the fact it’s a recognised condition helps people take it seriously. I have Behçet’s on my official record but I choose whether I tell people or not – having an illness that isn’t particularly visible can be difficult when you want support, but it can also work in your favour if you want to be treated the same as everyone else.”
“In one respect it does because it is something diagnosed by a professional that, when researched, gives my employer an insight without me having to explain too much. On the other hand, as it is not a well-known syndrome, my employer has not taken the opportunity to conduct any research into it leaving me to explain as I am experiencing pain there and then. The saving grace about my condition is that I can still be ‘normal’ on the outside to others when on the inside I am in a whole world of pain, so I am apprehensive about engaging in discussions when I am suffering because most people look shocked.”
“Yes I believe it does, rather than having something vague that they might not understand, it gives clarity and a name that they can then research if they want to.”
“Until you get the diagnosis you can’t get the help you need. I was off a lot before the diagnosis. I had 18 months off at one point. Once I was diagnosed, the initial treatment meant I was in work more but still having big chunks of time off. Each time I started a new drug, things gradually improved. I increased the time between sick leave and decreased the amount of time off. Now I’ve got the best sickness absence record on the Watch.”
How do you manage sickness absence?
“Sickness absence can be difficult and can cause anxiety due to feeling guilty about not being at work. It can be isolating as I worry about even leaving the house while off sick. I can manage sickness absence by managing my own stress levels and also by communicating with those at work how I am really feeling and whether I need help with anything.”
“I take time off when I need it and I don’t go back too early. I used to try and get back too soon and just ended up having more time off.”
“I communicate with my manager as and when I am suffering. My manager is very understanding and I am always able to obtain proof of all appointments and treatments to authorise my absence.”
“I’ve declared my illness at work which means doctor’s notes that link the absence to Behçet’s are considered differently than if I was off for random illnesses. I still have to go through the same occupational health processes as everyone else when I’ve been off a certain number of days, but over the years I’ve built up a relationship with them and it’s more about whether they can help me manage or make any further reasonable adjustments.”
Has anything made a positive difference to you at work, and has your employer made reasonable adjustments?
“The distraction is paramount for me, and luckily I am in a job where I get to inspire and motivate people to progress into work whilst experiencing barriers. As my disability is one of my main barriers to employment, I feel that I can relate to and effectively signpost individuals experiencing similar obstacles.”
“I’m fortunate that I work for a company that allows flexible working and being able to work four rather than five days a week makes a huge difference to me. It allows me a day to recharge but also gives me the flexibility to take doctors and hospital appointments on my non-working day rather than racking up a huge sickness record. This helps people’s perceptions when I am off sick as it highlights I’m trying to manage my illness with minimum disruption to work.”
“The Support Coordinator has been so helpful, including sending the employer’s guide for those with Behçet’s. It makes it a lot easier to explain to management when you have a label for an illness and can make it easier to understand for them. I am now able to attend regular appointments at Birmingham without having to use annual leave for this. I have recently had a change to my working pattern by working half of the day doing the physical side of the job and the other half doing desk-based duties which really helps me manage my fatigue. And as we all know exercise is a really important aspect of managing fatigue, so I’ve also had my lunch time adjusted so that I can leave earlier; this enables me to fit my exercise in after work. This was all made easier to implement with the help of an amazing occupational health doctor who really went the extra mile to ensure I wasn’t running before I could walk!”
“They did a workplace assessment. I had a new, bigger screen that is better for my vision and an ergonomic chair that is more appropriate for my joint issues. They gave me more supportive boots and changed the absence management process to allow me more sick leave.”
“So far, I have had an in-work assessment. They have produced a document stating the suggested reasonable adjustments. That was sent to myself and my manager and I am anticipating the delivery of such suggested items (new chair, screen protectors, daylight lamp and light, footrest).”
“I stick up for myself now. It takes time to learn to stick up for yourself. You have to train your managers.”
Is there anything you do outside work that helps you manage your Behçet’s disease in work?
“Exercise definitely helps me manage my fatigue, but it’s also important to find time to relax; I enjoy reading and having some pamper time for myself! I have also learnt that not putting too much pressure on yourself and knowing what you can and can’t do is really important. Try to take time to appreciate small goals; it can be difficult when an illness stops you doing things, so it’s important to see the positives.”
“I eat better and do lots of walking… walking the dog. Do activities you enjoy, that keep you stimulated.”
“I ensure that I get enough rest so that I have enough energy for the week. I also do something new every payday to remind myself that I work for a better life for my son and me.”
“I’d like to say I pace myself but I’m afraid I’d be lying! I love doing creative things in my spare time such as card making and knitting, and this year I’m learning to crochet. As well as having a product at the end of it, the whole process is therapeutic, makes you feel positive and is another distraction from any symptoms! It’s even better when friends are involved and there’s a social side to it too!”
Any final thoughts/top tips you’d like to share?
“Don’t let Behçet’s stop you going for anything; always give anything you are able to a try. Also be honest with your employer about your condition from the start. Others around you may not always understand as it is an invisible illness, but you can tell those you trust and know well what you feel able to share; they are often very understanding.”
“It’s better to start a career that you love instead of just any job. Any job is not sustainable and with our bodies changing at random times beyond our control, I would recommend to bring routine and structure to the things that we CAN control. Also, when you are in the job that you love, you will still have those days when you can’t put one foot in front of the other, but it can motivate you when you have in the back of your mind that you would be missing out on doing something you love. I have met a few people with Behçet’s now, and not one of us have been affected in the same way by our symptoms. I think it would be helpful to (in your own time) compile a document stating HOW Behçet’s affects YOU and HOW with this support you plan to MANAGE this.”
“Try not to let setbacks get you down. I was offered early retirement on ill health grounds almost 20 years ago when my Behçet’s wasn’t well controlled and was flaring frequently. I was devastated that occupational health didn’t think I would get better or that I was capable of working and I guess I wanted to prove them wrong! At that time we didn’t have information leaflets written by medical professionals available, and I’d recommend these are used if you’re explaining Behçet’s to a new or existing employer.”
“Doing a job you like and that motivates you is my key as it can be difficult getting up and turning into work each day when you’re battling various symptoms, and I’m not sure how I’d do that if I was bored or unhappy at work and if my only reason to go was the payslip!”
“When you’re feeling your worst, although you don’t know how long it’s going to go on for, the only way is up.”
Some people are unable to work, but for those who can, employment can have mental and physical health benefits. The teams at the Behçet’s Centres of Excellence are keen to support patients to find and maintain work where they can, whether that is voluntary or paid work.
In addition to support provided by Clinical Psychologists at the Centres, your Support Coordinator can work with you in a variety of ways. These can include helping you to find voluntary work if you want to improve your CV or take a first step back towards work; writing support letters for your employer, explaining what Behçet’s disease is and how it might affect you at work;
suggesting reasonable adjustments that might help you; and signposting you to other sources of support. They can also provide you and your employer with a copy of the BSS booklet “Behçet’s Syndrome – An Employer’s Guide”, which people are finding really useful.
When you are at your lowest ebb, with poorly controlled illness, you might not be able to imagine ever working again, but as the patients in this article have shown, you might well come through a bad patch to find the things you once thought impossible are possible again. Not necessarily easy, but possible.
With very many thanks to Chloe Miller, Jan Mather, Paul Allen, and Taniqa Griffith-Browne.