MULTIPLE SCLEROSIS PART 2

What would be your reaction if the pretty lady making a major sales pitch to a board room full of potential investors met you in the bathrooms afterwards and told you she needed to change her diaper? I was similarly taken aback on a Saturday afternoon seated in a cosy living room with a dozen ladies from all walks of life.

I spent the day being educated by patients about what exactly it entails to live with multiple sclerosis. Judy* was probably the most outspoken person in the room. She had no qualms talking about her need to use diapers. After all, she spent weeks in hospital, totally incapacitated and on total nursing care at the time of her diagnosis. She must be the go-to person when seeking to compare different brands of adult diapers in the supermarket.

Judy explains that having a medical background has its downside. Waking up in the intensive care unit to find all manner of tubes coming out of every orifice is no joke. It makes you know that you have just cheated death. She survived the ordeal painfully while 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 many difficult moments when she thought of giving up. This is a sentiment echoed by many in the room. Each one has had a moment when suicidal thoughts crossed their minds. Yes, the effect is savage, to the body and most certainly to the spirit.

How can it not be? When you find yourself forgetting little important things; when your mind seemingly takes ages to process simple instructions; when you go on emotional roller-coaster moments consisting of hopeful, happy times alternating with tearful, angry ones and you can’t shake it off.

The disease consumes your being. You become a case rather than a woman. A woman who craves sexual intimacy with your husband but he has seen you teetering on the brink of death, he is so scared of touching you as he thinks you are too fragile you might break. Your libido is in the dumps and you no longer feel attractive.

As a woman, you learn to devise ingenious ways to reclaim what is rightfully yours. However, you know you are missing out on the best part of it because the wretched MS did a number on your sensory function and your genital region neither perceives nor responds to touch. This is when vaginal lubricants become a staple on your bedside drawer.

Lucy’s* biggest concern during intimacy is not whether she is enjoying the experience but rather 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 has expressed concern and it is beginning to bother her. The rest ogle at her with envy. Sally* is even more worried. Despite not having MS, her husband does. He has struggled with sexual dysfunction for years now and she is seeking help.

Dora* is 28 and wondering about her chances of ever being a mother. Though the disease does not impact her fertility, the cytotoxic agents that her doctor is sometimes forced to prescribe are a real threat to her ovaries. In addition, she has to contend with a much higher chance of a complicated delivery that may necessitate surgery or instrumentation at childbirth.

As everyone shares their challenge amid peals of laughter, yes one survival tactic that they have all learnt is good humour, a common challenge emerges. There is an obvious gap in the holistic care of multiple sclerosis patients. The key specialist is the neurologist. These are a scarce resource in Kenya. Most of the ladies in the room are under the care of the same leading professor currently.

The good professor has been their solid rock when death beckons, fighting for the restoration of their health. However, beyond teaming up with critical care intensivists and physiotherapists, little else is catered for.

Few anesthetists are comfortable with expected complications of multiple sclerosis patients undergoing anesthesia. One wrong painkiller and the patient would 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 as they are not coming from a background of science.

Holistic care for these amazing women requires to incorporate neurologists, intensivists, radiologists, pathologists, physical and occupational therapists, gynaecologists, gastro-enterologists, 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.

As we struggle to tame the disease, what good is it to keep our patients stable if we then go ahead and deny them an opportunity to be productive? One of the biggest social challenge they face is work discrimination. 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 tend to hold back this information from potential employers, especially when it is not asked of, just so they can have a shot at proving they are valuable.

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 of them have been jobless for months, yet they still wake up daily with hope that tomorrow will be better. How they see themselves is what matters, not what the world sees. This is their mantra.