In this article, we’ll explore how people with MS can optimize employment and prevent job loss with Dr. Blanca De Dios who is working on that topic quite intensively.
Living with MS brings unique challenges, and maintaining employment can be a significant concern. Dr. Blanca De Dios will share valuable insights, strategies, and success stories to empower people with MS in their professional journeys. Join us to discover practical advice and the transformative potential of embracing strengths amidst adversity. Whether directly affected by MS or seeking understanding, this interview offers valuable insights that can make a profound difference.
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Table of Contents
Introduction - Who is Blanca De Dios Perez?
Hello and thank you for having me here. Saying something private about myself… well I guess the first obvious thing is that I am originally from Madrid in Spain. Hence, the Spanish accent. However, I have been living in the UK for over 8 years now.
Regarding hobbies, I am a big fan of hiking and ice skating.
Personal motivation for your career choice?
I studied Psychology at Complutense University of Madrid (Spain), and I developed an interest in research and in particular MS during the final year of my degree when I completed a neuropsychological assessment of MS as part of my final project degree.
I grew up knowing several people with MS including a neighbour and the mother of a friend, but I did not really understand what MS was. This led me to pursue an MPhil in Psychology at the university of Manchester understanding word finding difficulties in people with MS.
I met a large number of people with MS and over 100 people from Salford Royal Hospital participated in the main study of my MPhil completing a range of language tests. It was then that I realised that there was a common topic with people talking about their kids, and families, but especially about their jobs and some problems they were experiencing. For example, forgetting words in a meeting, or feeling fatigued at work and not knowing what to do. Hearing about their experiences made me realise how important work is for a person’s identity, however, there was little to no help available.
Thus, when I saw the advertisement for a PhD at the University of Nottingham looking at developing a programme to help people with MS stay at work, I was very keen on securing that project, and fortunately, I did. So it’s been now 5 years working on researching what can be done to help people with MS to remain at work.
Employment Challenges and Risks for Individuals with MS
What are the common challenges that individuals with multiple sclerosis (MS) face when it comes to employment?
The problems that people with MS experience at work are multifaceted.
Of course, people with MS experience challenges managing their symptoms at work. The most common ones are fatigue, memory and thinking problems, and physical difficulties. These can lead to problems concentrating in meetings, remembering your actions, or even travelling to work.
However, the environment which includes the layout of your office, or the attitudes of your co-workers also lead to common challenges at work. For example, not having an accessible bathroom or having to travel across the country for meetings, can worsen your symptoms and cause problems at work.
Regarding your relationships with co-workers, they may not understand your MS and comment on your abilities. Some research participants have reported being told comments such as: “why yesterday you could walk but not today?” or “We are all tired here”. These sorts of comments can make you feel undervalued at work and worsen your relationships with co-workers.
As you can see the challenges are a combination of the MS symptoms and the environmental factors.
Are there any legal protections or accommodations in place to support individuals with MS in the workplace? And do you know how it is in other countries?
Yes. But these legal protections depend on the country where you are working. For example, in the UK we have the Equality Act 2010 which is a series of antidiscrimination legislation to protect people with illness or disability from discrimination in the workplace and in wider society. People with MS are directly protected under the equality act even if their MS is not affecting their day-to-day activities.
Under the Equality Act, employers are legally obligated to provide reasonable adjustments (which are changes to your work duties or environment that are offered to people with disabilities if their disability puts them at a disadvantage compared to those who are not disabled).
At least in the UK the challenge we find is what is considered as “reasonable” by an employer. Which means not everyone receives the support there are entitled to at work.
I am not familiar with how antidiscrimination legislation works in other countries, because it is quite complex to understand. However, I am aware that some European countries including Germany put the responsibility to helping a person to get back to work after illness or disability on the employer and offer an inclusive rehabilitation system where all workers are entitled to rehabilitation.
How important is open communication with employers and colleagues in creating a supportive work environment for individuals with MS?
Very important. Even though MS is a common condition, not everyone understands MS and it is very different from person to person. Having an open and honest conversation with your employer about MS can help you negotiate support and help them understand how it affects you personally, which can lead to better relationships at work.
Additionally, MS is unpredictable and fluctuates over time, which means that if your employer does not know you have MS, and you have a relapse and are out of work for months, it can be a difficult situation for both employer and employee to navigate.
Employers can offer reasonable adjustments to help you manage your MS better at work. In the UK employers are legally obliged to offer reasonable adjustments to people with MS. However, if your employer does not know you have MS, they do not have to provide them.
All this being said, according to your relationship with your manager or the work culture of your organisation, we need to be cautious with how we disclose MS to employers. Many people with MS do not disclose their MS at work because of fear of discrimination, which comes from past experiences of seeing employers not being supportive of an employee with other needs, or because the culture of the organisation does not allow the person to receive further support.
Strategies for Managing MS in the Workplace
What strategies can individuals with MS use to effectively manage their symptoms and maintain productivity at work?
Well, these are always highly individualised to the role and symptoms that the person with MS experiences at work.
For example, if someone experiences problems with memory and thinking at work because they work in a large open-plan office, we could recommend using noise-cancelling headphones, securing a quiet room to work, clearing your desk, or keeping detailed records of your tasks.
For fatigue, we could recommend understanding what is causing the fatigue and how your energy levels fluctuate over the day. Completing a fatigue diary is useful to learn about your energy patterns. Once you understand how your fatigue levels fluctuate over the day, you can distribute your work duties accordingly. Also, what we eat and drink over the day affects how our symptoms change during the day and that is why this is highly individualised, because each person experiences their symptoms in a very different way.
Are there specific job roles or industries that are more accommodating to the needs of individuals with MS?
Usually, office-based jobs are more accommodating than physical jobs. Large organisations may be able to pay for accommodations such as improving the accessibility of a building.
It is a complex answer. For example, if you work in a small family-owned company, they might be more supportive of your needs, than a start-up company that is constantly looking for further funding to survive.
I think here again, it depends on the employer and how willing or able they are to offer support to the employee with MS.
Can you discuss any workplace policies or initiatives that have been successful in promoting inclusivity and support for employees with MS?
I guess companies that allow their employees with MS to work flexibly might be more successful in keeping their employees with MS at work for longer.
Flexibility at work refers to allowing one to work from home, take breaks during the day, changing the time at which a person starts or finishes work, and allowing them to take control of their work schedule so that they are not forced to work when their symptoms are worse.
For example, if you must travel to work during peak traffic time, you might reach work exhausted. But if you are allowed to reach 45 minutes later, that might save you 1 hour of transport and therefore, you arrive more energised.
What role can healthcare professionals play in assisting individuals with MS to optimize their employment and prevent job loss?
I think the first thing is for healthcare professionals to understand that work is good for health. And, when a person is diagnosed with MS, the message should be “Do not make a rushed decision about your work right now”. Many people leave employment after diagnosis, and years later they regret it because they realise that they can still work.
Employers also values the knowledge and skills of healthcare professionals, and they could write letters to employers explaining what MS is and offer ideas for reasonable adjustments that might be beneficial for their employees with MS.
Resources and Support for Employment Optimization
Are there any vocational rehabilitation programs or resources available to support individuals with MS in finding and maintaining suitable employment?
Again, this may vary from country to country and even within a country.
In the UK we have limited provision of vocational rehabilitation. There are few centres that offer vocational rehabilitation and usually, the waiting lists are long.
There is information on employment from national charities which offer booklets about MS and work.
In Europe, there are MS Treatment Centres, some of which offer VR interventions to people with MS.
How can individuals with MS proactively manage their career trajectory and plan for potential changes in their abilities over time?
- It is all about being able to adapt and knowing yourself.
- Set long-term vocational goals.
- Understand your symptoms.
- Do not be hard on yourself if you need to do things differently over time. Think about different alternatives and options.
- Be proactive. The need for reasonable adjustments may change over time.
Can you share any success stories of individuals with MS who have found innovative ways to optimize their employment and career paths?
Yes of course. I know a lady who was working with a manager who was constantly on top of her workload and did not allow her to receive any support and kept threatening her with the idea of having a disciplinary meeting, which she ended up having it. And it was a terrible experience because they kept calling her when she was off sick with a relapse. The relationship with the employer was beyond the point when it could be repaired. So thanks to the intervention we provided, she learned about how to express her needs and found a similar job with a different team. She secured the job and had an open conversation with the new manager, negotiated the support she needed, and was extremely happy and satisfied to work in a team where they accepted her and supported her to be the most productive person she could be.
I also know a midwife, who worked delivering babies, but because of MS, she lost sensitivity in her hands. Thus, at work, her role changed so that she had a role teaching students and sharing her wealth of experience to keep her employed.
Creating an Inclusive and Supportive Work Environment
What strategies or interventions can employers implement to create an inclusive and supportive work environment for employees with MS?
I think employers should offer support tailored to the needs of each employee. We all work in different ways and have different strengths. Support each employee to become their best self by allowing them to work in the approach that is most beneficial for them is a good way to start.
Also, they can lead by example. If an employer is kind to employees who are going through a difficult time or need to take time off to take care of a family member or for childcare reasons, the experience of seeing your employer being kind to others, will make their employees be more likely to request support when they are in need, as opposed to hide it and underperform in the background.
How can individuals with MS effectively communicate their needs and accommodations to their employers without fear of discrimination?
When a person with MS has decided that they are ready to tell their employer that they have MS, they should plan carefully for this conversation.
First, I think it is important to think how MS is affecting you at work. They may already know someone with MS, so it is important to explain that MS is different for everyone, and it fluctuates over time.
You will have to think about when the best moment is to have this conversation, and whether you want to have someone with you when you are telling them.
You should think about what support (i.e., reasonable adjustments) you need at work to help you remain at work for longer. It is important for the employer to understand that you are requesting this support because you are committed to remain employed and work is good for health, so they do not need to worry that working would be bad for your MS.
Are there any potential financial considerations or benefits that individuals with MS should be aware of regarding employment and job retention?
The benefits are clear, being employed is good for your physical and mental health. Unemployed people with MS have poorer mental and physical outcomes than people with MS who are employed. Those who work part-time show more deterioration in walking ability, fatigue, and depression than those working full-time.
The financial considerations vary according to each country, but being employed allows you to be economically independent for longer. Some people may choose to work part-time to manage better their MS symptoms, but this might help them remain employed until retirement age. I think it is always important to speak with an expert to discuss your pension plan and implications on working part-time or leaving the workforce prematurely.
How does mental health and emotional well-being impact employment outcomes for individuals with MS, and what support is available in this regard?
The interaction between mental health and employment is a complex picture. For example, we know that employment can contribute to improving the quality of life of people with MS. When we are employed, we interact with people, have a sense of purpose, and work is part of our identity.
On the other side, having high work demands with MS progression and the unpredictability of MS can lead to higher levels of stress.
There is a need to offer support to employers and employees to manage MS in the workplace and identify reasonable accommodations that can help the employee with MS to manage their performance at work.
Future Outlook and Advice
Can you discuss any ongoing research or advancements in the field of employment support for individuals with MS?
Finally, what message of encouragement or advice would you like to share with individuals with MS who may be facing employment challenges?
For those who are newly diagnosed, please do not make a rushed decision about your work. You can still work for many more years, and if needed roles can be modified to suit your needs.
For those who have been working with MS for a long time, you have a lot of value to add to your companies. If you are experiencing difficulties at work, they are not because you are not a valid employee, but because you are not being supported in the most suitable way. Your knowledge and experience in the company are of great value, even though when things are hard, it can be difficult to think positively.
Farewell
How and where can interested people follow your research activities?
A big thank you to Balnca for all her research and valuable tips for how to stay as long as possible in the job and why being included in the social system is good for many aspects of life.
See you soon and try to make the best out of your life,
Nele
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