Dubai: Being in denial of a disease is the biggest disservice you can do to yourself, says an Emirati warrior who is inspiring others with her fight against Multiple Sclerosis (MS), a medical condition that affects the central nervous system.
UAE-based Muna Al Harbi, a leading MS advocate and personal growth coach, was diagnosed with MS in 2015 though her symptoms had started surfacing nearly three years earlier.
“But it is unfortunate that instead of taking the symtpoms seriously and going in for thorough medical check-up, I ignored it. I was in a very dark place in my life where I blamed myself for everything bad that was happening to me,” Muna, a mother of three, told Gulf News.
Now, so others don’t make the same mistake, she is out to help create awareness and acceptance of the condition with the help of international pharma company Novartis. In conjunction with Gulf News, they have initiated an insightful podcast series MS Talks, which has attracted a large following in the community.
As host of the podcast series, Muna seeks to inspire others. Not letting her condition to break her spirit, she has drawn strength from it to educate others in the community.
”The frustration of not knowing about such a disease is what made me who I am today, I felt that ignorance of such symptoms was eating me from the inside and I indulged in self-blame, attributing all the signs and pain to weight issues. It never occurred to me that a disease was causing such depression and self-pity,” saids Muna, who took to personal life coaching to be able to address her own health and motivational issues.
She said, “When a friend told me about coaching, I enrolled into the programme for six months and that truly transformed me from within. Just recalling that phase and writing these words brings tears to my eyes. Life coaching is an amazing journey that transformed me in so many ways that I have become a strong person today and can easily help transform other people’s lives and make them look at themselves differently in a way they did not look before.
Acceptance is the key; MS is not a sentence
Muna said she went through phases of denial, depression and anger before she actually accepted MS and made it her friend. That helped her to move forward in her life. “I got to a phase where I know and feel strongly that my MS is a blessing to my life and I cannot picture myself not having it. I do not believe in incurable diseases, because if we look to all other diseases like diabetes or high blood pressure….etc. they all require lifetime medication and a certain lifestyle. MS also requires a certain lifestyle and continuous medication, I always tell my followers with any chronic disease, either you control it or it controls you.”
She cautioned other MS patients about the dangers of being in self-denial. It is important people acknowledge they have the condition and make peace with it. “Being in denial can backfire. In the early stages when doctors give us steroids, we resume a normal life. When people research online on MS and read about the challenging conditions, they find it difficult to imagine themselves undergoing it until one of these conditions actually occurs. Taking second and third opinions may help in getting over the denial phase to start accepting and moving forward with your new lifestyle. Learning about it and finding the right resources is very important. The channels are there.”
How to cope with everyday challenges?
Everyday can be a challenge for MS patients. ”In my case, one such daily challenge is participating in physical activities with my children. It is hard to commit to a plan of physical activities, and be interrupted by typical MS symptoms that can ruin that time. Recently, one of my hardest challenge was getting a meaningful sentence out. It felt like I could not find words. I get a lot of brain fog that makes me feel embarrassed; sometimes answering my children’s simple curious daily questions is difficult.”
She said family support is very crucial for MS patients. “My family went through the same emotional rollercoaster that I experienced. I would like to think of family support as being there for each other. My father would call me every morning just to check up on me, although we would be repeating the same conversation every day with hardly any noticeable difference. However, he would keep reassuring me; we both needed to hear it. I needed to hear his voice and see his number on my phone and he wanted to hear from me that I was fine. That was true of my conversation with my siblings too. I recall one of my brothers was having a tingling feeling along with tremors. He got himself checked because of my MS. He called me and we exchanged notes. My sister Mariam has been supportive too. She has a medical background and has always there for me. My husband too stood by me even when he was going through the most intense phase of denial and emotional coping as he had an autoimmune disease himself. That made both our challenges in life like normal for each other. I think every MS patient has his or own touching story.”
Why communities need to be more sensitised
Muna, who lives in Abu Dhabi, said community resources impact the health of a patient. “Our community had a lack of reliable MS resources. We need more support groups and I think my podcasts will be a helpful resource for recently diagnosed people.
While many alternative healing advocates talk about non-allopathic approaches to dealing with the condition, Muna advised caution. Her advice to fellow MS patients is to live life one day at a time and embrace change. “I would strongly encourage fellow patients to swallow the change pill, adapt and tweak their lifestyle to this new phase. In my book Women Who Inspire that I have co-authored, I have pointed out that it is important for a person with MS or any person with chronic disease to get out the comfort zone. Notice everything in your daily life. The moment you start feeling comfortable with something, go out and change the status quo, even if it means doing something uncomfortable at that moment. Change is important as it provides you with a different perspective. I use the metaphor of a smartphone. For some people, a smart phone is communication device, for some it is an entertainment device and for still others it is a gaming device. The same way goes with MS too, if you look at it as a disease that will hold you back from achieving your goals, then that is what it is going to be. However, if you look at it as friend that is always there, you will be sensitised towards the learning that comes with it. All the answers are within you.”
What is MS and its incidence
According to statistics published in Multiple Sclerosis International, a peer-reviewed international medical journal, studies conducted in the UAE indicate the incidence of the disease in 64 people per 100,000 with 60 per cent of the people in the study being Emirati. This average is higher than the rest of the world.
MS occurs when the immune system attacks nerve fibers and myelin sheathing (a fatty substance, which surrounds/insulates healthy nerve fibres) in the brain and spinal cord and can result in one or many of the symptoms of MS. This includes, fatigue, muscle spasm, numbness in limbs, tremors, pain in walking, difficulty in moving arms or legs, stiffness, gait and balance problems, brain fog and many other signs.