Living with multiple sclerosis: An Emirati mum’s perspective
Muna Al Harbi, a multiple sclerosis patient and warrior, whose videocast on the subject is now available on gulfnews.com, tells Anand Raj OK how she discovered she had the disease, how it changed her life and what she is doing to help others with the condition
Looking back, Muna Al Harbi believes that the first time multiple sclerosis (MS) gave her a hint that it had affected her was while she was on a trip to Dubai in 2013. Along with her two children and her babysitter, the Abu Dhabi-based Emirati was enjoying the fabulous musical fountains of Burj Khalifa when it happened. “My kids were running around and I was playing with them trying to catch them when I suddenly collapsed,” she says, in a video interview from her home in the capital.
At the time she put it down to exhaustion due to the hot summer: “It was July and I thought the heat had got to me.” Her babysitter immediately rushed to help her giving her water and helping her rest for a while before taking her to the hotel where Muna and her family were staying for the weekend.
She quickly felt better and didn’t think much about the incident until two years later, in 2015, after she had her third child. One morning, she found she was struggling to get up and to walk. “That’s when I started paying attention to what my body was trying to tell me,” she says, a gentle smile on her face.
Actually her body had been giving her subtle indications even before the time she collapsed while playing with her children. Way back in 2012, she remembers feeling a tingling sensation in her fingers. “But I didn’t know about this disease or its associated symptoms and so did not pay much attention to it.” Muna was pregnant at the time and assumed the tingling could be because she was a tad overweight.
It would be much later when she would realise that they were symptoms of multiple sclerosis – a condition she would be diagnosed with and which would change her life.
Put simply, MS is an inflammatory disorder of the central nervous system that disrupts the flow of information within the brain, and between the brain and the rest of the body. Experts believe it occurs when an individual’s own immune system attacks healthy cells and tissue.
MS is known to cause a wide range of symptoms, including those related to vision, limb movements, sensation and balance. Numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis are some other symptoms. Everyone’s experience with MS is different and these losses may be temporary or long lasting, say experts.
The disease has no cure; medication and therapies, though, help in slowing progression of the condition and managing the symptoms. Progressively, MS can leave patients them with limited mobility.
Worldwide there are more than 2.5million MS patients; in the UAE, approximately 55 in every 100,000 people live with the condition, says a 2017 report from the Salama bint Hamadan Foundation. The ratio, however, is increasing, the report adds.
Muna, who has a bachelor’s degree from UAE University and a Master’s in Innovation, Change Management and Leadership from Hamdan bin Mohammed Smart University, decided to consult a doctor in 2016 after she found herself struggling to walk. At about the same time she also discovered that a blurry spot was developing in her right eye.
Her doctor ran a series of tests before suggesting that she consult a neurologist for a more detailed examination and diagnosis. Alarmed, Muna, armed with the medical reports, approached her sister, Mariam, who at the time was a medical student, hoping she could throw some light on her condition.
If her sister was shocked and saddened to see the reports, she managed to keep a brave and calm face, and suggested that Muna consult a neurologist right away.
On the scheduled date of the appointment, Muna, a mother of the three, decided to take along her mother, her pillar of strength. “Mother is a cancer survivor; she survived two types of cancer and I felt she was the strongest person I could have by my side when the doctor would pronounce the diagnosis... she could give me the strength to hear my diagnosis.”
Muna still remembers the words of courage, consolation and care that her cancer survivor mum provided to her: “Holding my hand in her’s she told me ‘whatever the doctor says about your condition, remember you are strong. You have faith in Allah and you will be able to survive whatever comes your way. He will protect you; He will give you the strength’.”
Those emotional and motivational moments, Muna says, gave her the strength to face the neurologist. “Mum’s words made me very positive and strong. A stage 4 cancer survivor, she was given just six months to live after her diagnosis; but now 11 years later she is fine, by the grace of God. She gives me the power to overcome any challenge. I derive my strength from her. My MS is quite minor when I compare what she went through.”
Accepting the diagnosis
Despite the words of encouragement, Muna admits that it was not easy to come to terms with the diagnosis.
Initially she thought she could take some medication and would get better – “like how my mother took chemo and was better” – unaware at the time that it was a chronic condition, one she would have to live with for the rest of her life.
Unwilling to accept the diagnosis, she visited several doctors hoping one of them would tell her that her condition was not MS. But it was not to be. “That’s when I met my doctor who told me, ‘Muna, this is your reality and you should learn to accept that this is a chronic condition; you have to learn to live with it and start treatment right away’.”
She knew that the treatment was only to modify the disease a bit, to make the symptoms less severe and to work towards preventing paralysis from setting in.
Acceptance, admits the MS patient, was not easy, and like almost all patients who are diagnosed with such conditions, she went through the various stages – of denial, grief, depression, reluctant acceptance then acceptance.
A million questions swirled through her mind, though, and she sat her sister down to ask her all about MS and how it would affect the body.
The fact that it is not a common disease meant information was not easy to come by. “None in my family had it, fortunately,” she says, “but all were very supportive of me.” Her father would unfailingly call her every morning and enquire about her health and how she was feeling. “I was actually beginning to worry about them worrying about me. I always believed that I should be supporting and caring for them in their old age and not vice versa. I would feel guilty about that.”
Over time, she began to accept her condition. “I am truly blessed to have such a support system and I should be accepting of all help.”
How does she draw the strength from within her? I ask.
Muna is silent for a moment as she adjusts her sheyla. “I guess it is the way I look at the situation my mother went through.” When she was detected with cancer some 11 years ago, the entire family was devastated and stressed out. To deal with it they also had to go through the same stages of denial, grief, depression and acceptance.
“To go through a hard situation in life you need to go through the various stages,” Muna says. “But I also realised you need to learn to avoid taking too much stress. The fact that I have young children was another reason I felt I had to go through this and learn to become strong.”
Growing strong
Life has changed quite a bit for Muna since she has been detected with this life-changing condition. “It has got me to where I am now – a life and transformational coach, among other things. I am very positive and upbeat about everything in life. I think I’m doing well,” she says, her eyes crinkling as she smiles.
Most days are busy for the mother-of-three who is also a motivational speaker always ready to listen to MS sufferers, calmly taking their calls, answering queries and motivating them. “I stay busy,” she says.
Her day starts at 5.30am when she wakes up and gets ready to head to work (she holds a government job) and is back home at around 4pm. “Once home, I spend a couple of hours with my children, engaging with them, listening to their stories, being with them… I must admit I might not be completely with them but I think mothers get me when I say that I listen to them.”
Some days, she plays board games or joins them in some group activities or does yoga, particularly plenty of stretching exercises. “Some days, if I’m not tired, I prepare dinner, then get the kids to shower and into bed.”
She admits that there are days when she is unable to finish all things on her to-do list for the day. “But I forgive myself and say that I tried. I don’t beat myself up over it.” She insists MS patients must learn to listen to their bodies to recognise symptoms and cues of fatigue or exhaustion, and stop and rest immediately.
“Sometimes, you might need to take a break even when you are doing something enjoyable like being with your children. But you need to rest and recuperate whenever your body tells you to.”
Muna, who manages her website and her YouTube channel, and has co-authored a book, has recently done a podcast in association with Gulf News and Novartis. “From the outside it may appear that everything is easy. But what people don’t see is that there are plenty of ups and downs. What I want people who are experiencing hardships or challenges to realise is that it’s ok if you don’t have it all or you don’t do it all. Do things that you are happy doing, which don’t overwhelm you.”
Is there a message she has for people struggling with such conditions?
Muna smiles: “Keep moving forward. Accept your condition and keep moving forward. I know it might not be easy initially but keep little posters and notes and vantage points. I have posters even on my desk with messages saying just that: ‘Keep going forward. Live in the moment.’”
Muna’s tips to help those struggling with similar conditions
I don’t want to make it sound easy. Coping with this condition is not easy. It’s a process and you should go through it, through all the stages. If you are feeling depressed, accept it and go through it. Go through the phase of denial. Accept what you are going through; unless you reach the acceptance from within, you cannot be ok and know how to live with it.
It’s important for a patient with a chronic disease and their care givers to understand that the time frame for acceptance is different for each person. There is no one size fits all. The only thing is you need to have a will. That coupled with a strong support system will see you through the most difficult phases and help you reach the acceptance point.
Live in the moment, in the now. Learn to appreciate and understand how precious each moment is.
This is especially true during these times of the pandemic when people either live in the past or keep thinking of a future of what might happen. What happens is that subconsciously they are ruining their emotions of their present, ruining their ability to live in the now.
MS Talks — Keep Moving Forward
MS Talks- Keep Moving Forward is an indepth videocast series by Gulf News in partnership with Novartis to raise awareness about multiple sclerosis in the UAE, while shedding light on the disease’s symptoms as well as treatment options. Muna will host the five-part videocast series. Each episode features interviews with doctors and caregivers and offers an insight into the condition.
The podcast series that started this month tells Muna’s story of hope, where she, along with her son Hamdan and sister Mariam Al Harbi, offer viewers an insight into her journey with MS. Leading experts in the field including Dr Jihad Inshasi, Dr Ahmed Shatila and Dr Bassem Yamout as well nurses, Joelle Massouh and Asma Hasan, reveal more about the nature of the disease, latest treatments and the need for transparency in communication.
“I love this idea of videocasts simply because it cover all areas and answers all questions that people with the condition and caregivers might be having,” says Muna.
“People are reaching out to me to know more about symptoms, medications, what to look out for, what to keep in mind, women with the condition who are planning to get married and have a family… I, of course, am not a doctor so cannot tell them what medications to have, but the podcast answers a lot of common queries people have about the disease. It is very powerful and I am sure will have a strong impact on the community.
“The biggest challenge when it comes to this disease is taking this message to the community due to lack of resources. This podcast would help particularly because the experts and doctors’ views that are included.”
Joy Khoury, country head communications and patient engagement at Novartis, says: “Our mission is to enable people living with the disease to live free from the impact. Through a close partnership with the MS community and… Gulf News, we focus on solutions that go beyond treatment and put patients at the centre by raising awareness.”