What does awareness look like?
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It is a question I have been grappling with for a bit. Since maybe all the way back to 2002–2003 when I found out that my mother had Multiple Sclerosis. We were living in Pakistan then. It had been a good six to seven years since my parents were trying to figure out what was wrong with her, I am told. From one doctor to the next, apparently no one could figure it out until she was fortunate enough to get someone (her 11th doctor) who put all the symptoms together to fit the definition of MS.
You would think a diagnosis is supposed to make the picture of what’s to come a bit clearer. That was not the case for her. In fact, it is not the case for any patient who finds out they have MS, as I would later find. That is — if they are even diagnosed correctly. For years, throughout my teens, I studied MS further. I found myself looking for every breakthrough the doctors had for medicine, therapy and research surrounding it. When we took this information to Mom’s doctors, they informed us how it would take a while for the medicine to become available in Pakistan. Not to mention, the cost of each dose would be a $1000. She needed one a week.
We struggled with her MS for years until 2009, we made the decision to move the States. At that point in time, she was on a wheelchair, unable to walk and hold herself up. The summary of the circumstances surrounding her condition were these:
- There was no up-to-date medicine in the country available to us at a reasonable cost that she could take.
- There was no proper care plan provided to her in terms of diet, nutrition and exercise. At a point in time, she was taking 63 different pills every week in the hope of something working. In addition, monthly doses of steroids were added to the pill regime, just to keep her walking.
- There was no support group, MS society or educational program that she could have been a part of.
- We had never been to counseling as a family to learn how to cope with the difficult changes we all were facing with Mom’s MS.
- Nobody — family, friends, neighbors — knew what MS was. Neither did they seem to understand when we gave them the gist of what it is. It just never clicked for them what this disease does. To them, she always appeared to be ‘normal’.
- She lost her confidence and who she is as a person.
- We never talked about it. Not because we didn’t care. But because talking about it made her feel worse. Like something was wrong with her. My mother never accepted that she had to live her life with MS. But I often think, she was just never really told that she could live her life with MS too.
The element her care was missing: awareness.
That is the key difference we saw in her care when it transitioned over to the US. Coming to the States, we saw MS in a different light. Mom was lucky to get into medication trials that started to work for her. She came out from the wheelchair, on her two feet. Today, she has a great medical team surrounding her, keeping watch on her MRIs and MS progression. But most of all, they encourage her to engage in support groups as well as a diet and exercise plan. They give her the courage to talk about how she is feeling and to express herself in her down moments. We try and take her to as many MS support group sessions that she agrees to go to! However, while these are good things to do at any time for an MS patient, they are key when a patient is first diagnosed.
MS awareness campaigns have just begun to become popular in the West in the past seven to eight years. But developing countries like Pakistan are still mainly in the dark about it. There is little work being done in spreading word about brain health, symptoms for early diagnosis and almost no work around support for caregivers. If my thesis surrounds this topic, I will be diving into the how, why and for-who of MS awareness in developing countries, starting with Pakistan.
