In the second of a two-part article series for Multiple Sclerosis Awareness Week (25 April-1 May 2022), IP Ability committee member Debra Smith speaks with fellow MS patients to highlight the varied impact the condition has. These are powerful stories and valuable for allies who want to provide better support for colleagues and friends with MS.
Part I of Debra’s series can be found here.
I would like to introduce a group of people (“visible” on social media etc), each having very different backgrounds and perspectives, who have kindly shared their experience of Multiple Sclerosis (MS), working with MS and their “take home message”. These perspectives were provided in their own words with only a few prompts from me.
Initially I asked each of them to sum up their experiences in one sentence, but upon receiving their initial replies I realised that this was too constraining and so I then went back to them with a slightly broader brief. You’ll see below that each person’s response follows the following format:
- Date of diagnosis and type of MS now (an explanation of the stages of MS can be found in the first part of this article series, here)
- Background paragraph about their work, highlighting experiences of what works well for them and any workplace adjustments
- A free statement about what is most important to them that they would like people to understand/appreciate
I have advanced, progressive Multiple Sclerosis. So for me, working is of course partly about sense of self – and income! But it’s also mixed in with campaigning (see “free statement” below).
DIAGNOSIS – First symptoms 1992, diagnosed May 2007. MS is now “Secondary Progressive” and advanced: I’m a wheelchair user.
WORK – I work part-time for Shift.ms, the worldwide digital support network for people impacted by MS. I work flexibly and from home. I’m also a regular public speaker on all things Diversity. The pandemic has driven lots of virtual conferencing, which has been super handy!
FREE STATEMENT – Demonstrating that disabled people can and should be given the opportunity to work. Not out of pity, but because we can genuinely contribute diversity of thought and experience.
Ms Trishna Bharadia BA(hons), MFPM(Hon)
DIAGNOSIS – I was diagnosed in 2008 with relapsing MS and have continued to work since then, both employed for a business intelligence company and self-employed with my own business.
WORK – My self-employment is in health advocacy and patient engagement consultancy, which I got into directly as a result of my MS. My employment: I work for a business intelligence company as a Spanish-to-English translator and analyst, holding various roles since I started there in 2004, including managing a team of nine people for five years.
To sum my experience up in one sentence: I have been able to continue to work for my employer, despite the challenges I have faced with MS, because of the reasonable adjustments that I have in place, including working from home and flexible working hours, both of which help to manage my fatigue levels.
FREE STATEMENT – There are two things that are important to me when it comes to disability in the workplace. Firstly, never assume you know what someone is going through or what they may/may not need. Particularly in a condition like MS, where every person experiences the condition in different ways and many of us experience invisible disability; just because you know one person with MS, it doesn’t mean you know everyone with it. That brings me onto the next important thing, which is to create an environment where people feel comfortable being open about their requirements. Having those conversations is the first and most important step, in my opinion, so we need to make sure they can happen.
DIAGNOSIS – I was diagnosed with Relapsing-Remitting Multiple Sclerosis in 2008; however my first relapse was in March 2005. This long period of limbo is not unusual for those of us with MS, as diagnosis is often the final puzzle piece, and is based on two or more relapses and various diagnostic evidence.
WORK – I spent fifteen years in HR, in various industries, recruiting graduates and running large-scale graduate programmes. As with many with MS, I was diagnosed in my early thirties at the peak of my career. A few years later, I took the opportunity to move sectors and industry, into higher education, focusing on careers, coaching employability.
I have since worked with thousands of students and, in parallel, studied toward a postgraduate qualification in Career Coaching, which my workplace sponsored and for which I received a distinction. In 2018, I took a sabbatical.
Since my return, a powerful workplace adjustment has been the ability to work from home. My recent MS treatment has made me immuno-suppressed, and so I am very grateful to have the support from my employer to work from my desk at home. I have adjusted my working pattern accordingly, starting earlier in the day, and use dictation software for more intense executive functioning. My new role consists of communications and engagement and this, together with my adjustments, means that I am more effectively able to manage my symptoms whilst using my talents and experience.
FREE STATEMENT – As people with MS, we appreciate that not everyone understands – or may even have met – someone with MS. Often, many of our symptoms are not visible to others, which means that we may struggle to share the MS with our managers and our teams, not least because it is such private and sensitive information about ourselves. Whilst managers are aware of the responsibilities of an employer, most will not have received training around how to deal with the disclosure conversation. Therefore, if someone discloses their MS to you, you may wish to ask them “What support might you need?” and push aside any previous knowledge of the condition you may have had, being primarily led by the individual in what they need, and seeing any work adjustments on an individual basis, as a partnership between employer and employee.
Annie Bishop LLB(Hons) Adv cert Youth and Community, CQSW (social work) Diploma in Management, Diploma in Counselling
DIAGNOSIS – I was diagnosed with MS in December 2004 when I was 50, although I had symptoms prior to that. I had first symptoms when I was 27 which remitted. Over the years my MS has progressed and I have mobility problems.
WORK – I started my company in 2000 and worked from home doing independent assessments for court; good internet is essential. I worked as a children’s guardian in the courts covering Cumbria and Durham and used to drive a lot of miles every week from my home (probably 20,000 miles a year). I have also worked as an independent advocate. This mostly entailed phone calls and emails and rarely required face-to-face meetings. During lockdown I got used to Teams and Zoom meetings. I still do a small amount of advocacy work for a local authority nearby, although I dissolved my limited company a year or so ago because it wasn’t financially viable.
Fortunately I have always been blessed with a very good memory because some of the face-to-face work I did would’ve been difficult using a notepad and pen, so I would commit to memory and then write it down later, when I got home. It is possible to work with MS but it needs to be the right kind of work and under your control. That’s why being self-employed suited me very well and it involved using assessment skills. I have always used assisted technology in recording, initially Dragon Voice but the facility on Apple is very good. I am also a trustee of a local charity, acting as vice-chair, and I am particularly interested in governance issues and embedding of the Nolan Committee rules [see note below] into practice.
FREE STATEMENT – Being self-employed was good because I could control my workload. I am also a disability rights activist campaigning around welfare reform and benefits, and have a lot of contact with my local MP.
Editorial note: “The Nolan Committee rules” – In 1995 the Committee on Standards in Public Life, an independent government advisory committee, published “The Seven Principles of Public Life”, a report setting out the ethical standards expected of public office holders and service providers, also known as the “Nolan principles” after the committee’s first chairman Lord Nolan. The Nolan principles are: selflessness, integrity, objectivity, accountability, openness, honesty and leadership.