How would you react if the pretty lady making a major sales pitch to a boardroom full of potential investors met you in the washroom afterwards and told you she needed to change her diaper?
I was taken aback one Saturday afternoon, seated in a cosy living room with a dozen women from all walks of life, learning about what it means to live with multiple sclerosis (MS).
Judy*, the most outspoken of them, had no qualms about talking about her need to use diapers. We laughed as she declared that she was the go-to person for anyone who needed to compare different brands of adult diapers and settle on the best.
Judy had spent weeks on end in hospital, totally incapacitated and totally dependent on nurses. She woke up in the intensive care unit and found all manner of tubes coming out of every orifice in her body and persevered the ordeal as doctors worked to establish a diagnosis.
When it eventually came, she wished she had never woken up. It was a long and nerve-wracking journey to recovery. One peppered with difficult moments when she thought of giving up.
This sentiment was echoed by many of the women in the room. Each one had had a moment when suicide crossed their minds.
How could it not when you find yourself forgetting little important things; when your mind takes ages to process simple instructions; when your emotions swing from happy to hopeful then to teary and angry?
The disease consumes your being. You become a case rather than a woman. A woman who craves sexual intimacy with a husband who is so scared of touching you, because having seen you teetering on the brink of death, he thinks you are too fragile and might break on the slightest touch.
On the other hand, your libido might be in the dumps. You might long have lost that feeling of attractiveness and as you try to devise ingenious ways to reclaim your sex life, the wretched MS does a number on your sensory function – your genitals neither perceive nor respond to touch and vaginal lubricants become a staple on your bedside drawer.
For Lucy* the biggest concern is whether her anal sphincter will hold. Accidentally passing wind or even a bit of stool is a very real possibility and she cannot imagine how her boyfriend would react.
Jessica* is the odd one out. While the rest are mourning the death of their libido, hers is shooting off the Richter scale. Her partner is concerned and it is beginning to bother her.
Sally* is even more worried. She has no idea if help will ever come. Her husband is the one with MS and he has struggled with sexual dysfunction for years. Dora’s problem is whether she will ever fulfil her dream of being a mother. The cytotoxic agents her doctor is sometimes forced to prescribe are a real threat to her ovaries. She also has to contend with a higher chance of a complicated delivery that may require surgery or instrument-assisted childbirth.
Amidst the challenges, peals of laughter pierce through the air. The women have learnt a survival tactic – good humour – to get them through it all.
Nevertheless, they voice concern about an obvious gap in holistic care. Most of them are under the care of the same leading professor, a neurologist, who is the key medical professional for their care.
However, beyond teaming up with critical care intensivists and physiotherapists, little else is catered for. Few anaesthetists are comfortable with complications of multiple sclerosis patients undergoing anaesthesia. One wrong painkiller and the patient could be back to ICU on life support.
As Judy puts it with a lot of mirth, even the good old Professor did not know how to respond to her questions on sexuality. She knows that all the hyped “sex experts” on television cannot help her because they don’t come from a scientific background.
Holistic care for MS should incorporate neurologists, intensivists, radiologists, pathologists, physical and occupational therapists, gynaecologists, gastroenterologists, psychiatrists and counselling psychologists.
The whole team must work in tandem to ensure that it is not just the disease on treatment but rather, the patient as an individual whose medical needs are being fully addressed.
What good is it to keep our patients stable if we deny them an opportunity to be productive?
One of the biggest social challenges they face is discrimination at work. Many have lost their jobs because the employer fails to see past their challenges. This is despite them being highly skilled and experienced in their various professions.
They hold back information from potential employers, especially when it is not asked for, just so they can have a shot at proving they are valuable and capable.
You would think that with the constitution advocating for the rights of persons with disabilities and gender balance, they would stand a chance at putting their skills to use. This is not the case.
Several have been jobless for months, yet they still wake up with hope that tomorrow will be better. Their mantra is: How I see myself is what matters, not what the world sees.