In over two thirds of cases, Multiple Sclerosis (MS) affects women, and often strikes between the ages of 20 and 40 – during the prime working years. Disability Connect spoke to *Francis Smith, a 52-year-old attorney from Johannesburg and an MS sufferer, to gain some personal insights into her experiences of living with, and working with MS.
By Tarren Bolton
At the start of June, we celebrate Multiple Sclerosis (MS) awareness. World MS Day is observed on May 30th every year to raise awareness of MS and invite dialogue on the disease, and brings the global MS community together to share stories, raise awareness and campaign with those affected by MS.
First initiated by the MS International Federation (MSIF) and its members in 2009, World MS Day celebrates global solidarity and hope for the future. The 2022 theme is ‘Connections’, and the campaign aims to build community connection, self-connection, and connections to quality care.
What is MS?
Multiple Sclerosis is a chronic progressive neurological condition where the insulating covers of the nervous system are damaged. It affects the brain, optic nerves and spinal cord causing a range of symptoms such as problems with balance, vision, and muscle control. Symptoms vary from person to person. Due to the lack of research studies on MS, the exact causes behind it are generally unknown. Many scientists believe that there might be a connection between the onset of the condition and genes and/or nerve-cell dysfunction. Furthermore, there is no permanent cure as of yet. The symptoms can be relieved using the right set of treatments and medication.
Q&A with attorney Francis Smith
During this significant international exploration of relationships, connections and the impacts for people living with MS, Disability Connect (DC) brings you a Q&A with Francis Smith (FS), a 52-year-old attorney from Johannesburg and an MS sufferer, who reveals some valuable insights.
DC: Francis, when were you first diagnosed with MS, and can you provide a brief personal history of living with MS?
FS: I was diagnosed with MS in 2003 at the age of 33, when my son was 10 months old. Apparently, the pregnancy was a catalyst for the MS. It is also hereditary, but to my knowledge no one in my family has had MS. My first attack was an optic neuritis in my left eye resulting in double vision. After an MRI, lumbar puncture, and other tests I was given the diagnosis of MS.
I was given a series of cortisone drips every day for five days and eventually the double vision disappeared. Cortisone treatment is not pleasant and leaves you feeling extremely tired and bloated. I was very blessed not to have another attack until six years later when I had another attack in the same eye resulting in 50% loss of vision. After more cortisone and a reluctant stay in hospital I recovered fully. Further attacks occurred five, three and one year later respectively. The attacks varied and affected different parts of my body. Eventually when I experienced pins and needles and numbness in my face my neurologist recommended that I consider medication to prevent further attacks.
I was initially prescribed injections which I had to administer every second day. After a year my body started rebelling and I developed reactions to the injections leaving me with deep scars and pain. Thankfully, two years ago I was prescribed a tablet which I take every day. My life has become a lot simpler, and the medication seems to be working as I have had no further attacks.
I am very grateful that the medication is working. MS has however left its mark as I live with weak hands which are permanently in a state of pins and needles, and my sense of touch is compromised. When I am stressed, this condition worsens, and I struggle to use my hands.
DC: What support do you receive to help you deal with your MS?
FS: I do get some support from the pharmaceutical company that supplies the medication. I get a phone call from them periodically to check if I have any problems and mostly to see that I am still taking the medication. I also find support in peer-to-peer sharing with a friend who has MS.
DC: Do you feel that you are informed enough (patient education), and if so, has this empowered you to deal with your MS in your life in general, and in the workplace specifically?
FS: I feel that I have educated myself mostly by reading and talking to others.
DC: What does South African law state regarding the disclosure of MS in the workplace?
FS: As far as I am aware there is no obligation to disclose your medical status unless you anticipate that your health might be a problem in the workplace.
DC: What have your biggest challenges been in dealing with MS in the workplace?
FS: MS has had no impact on my ability to do my job and hence I have not faced any challenges. I do not see any need to make this known to my employer. I also think once you disclose your status, you run the risk of being labelled and stigmatized, whether it is intentional or not. My ability to write or type can be a challenge at times, but this can be overcome with technology.
DC: According to research, over 70% of women with MS who were surveyed said they feared their condition would affect their ability to work. More than 60% said they’d tried to hide their symptoms at work. Can you comment on your personal relation to this?
FS: I will not disclose my health status unless it is absolutely necessary. Even then I would be reluctant. I am hopeful that my condition will not deteriorate, and I try to be positive about the future in that respect. I do know that stress must be avoided as much as possible, so I do worry that my work environment and the work I do is not ideal for my health.
“According to research, over 70% of women with MS who were surveyed said they feared their condition would affect their ability to work. More than 60% said they’d tried to hide their symptoms at work.”
DC: Being diagnosed with a condition that causes movement issues, fatigue, and mental changes can make you fear that you may not be able to continue working at all. How do you deal with this, and what changes have you had to make, if any?
FS: At this stage I am coping with the restrictions I have and consider them minor compared to other more serious and debilitating forms of MS.
DC: What advice would you give to someone who has recently been diagnosed with MS, based on your personal experience?
FS: Speak to others and get a sense of what other people have done. Find a good neurologist and get another opinion if you are not happy. Do your own research and ask your specialist about the various medications available. Be willing to ask questions!
Multiple Sclerosis South Africa supports World MS Day
Multiple Sclerosis South Africa (MSSA) is a patient-driven organisation supporting and facilitating services to all persons with MS, their families and carers. MSSA speaks out, lobbies and advocates on behalf of the patient, with access to treatment and support being the biggest challenge. The ultimate goal is to make information available to everybody living with this incurable and debilitating disease, and their loved ones, too.
MSSA is a strong supporter of World MS Day and its ‘Connections’ theme, and champions the campaign by:
- Challenging social barriers and stigma that can leave people affected by MS feeling lonely and isolated
- Building communities that support and nurture people affected by MS
- Promoting self-care and healthy living with MS
- Lobbying decision makers for better services and effective treatment for people with MS
- Connecting people affected by MS to MS research
For more information on Multiple Sclerosis South Africa (MSSA), visit: Multiple Sclerosis South Africa
*Not her real name
References:
Karishma Abhishek. 2021. World Multiple Sclerosis (MS) Day 2022 — “Connections”. Medindia, viewed May 30, 2022, https://www.medindia.net/news/healthwatch/world-multiple-sclerosis-ms-day-2022-connections-207345-1.htm.
