Finding an MS Voice for Patient Centred Education

By Chrystal Gomes

As an introverted and painfully shy person until my late 20’s – I often couldn’t find my voice. I spent my late teens and 20’s working, traveling and speaking just a little more often, while still unsure of serious future goals. At the age of 28, I finally realized I wanted to pursue a career in hotel and convention management, and my life was now filled with hope and excitement.

I had completed my first year of the three-year hospitality program, when I suddenly became seriously ill. Following a horrible headache that had me praying for death because nothing would relieve the pain, I developed double vision, my speech became slurred and completely garbled. I lost all hand coordination, and I couldn’t walk without help… to name a few of my many symptoms.

My parents naturally first thought…that I had started drinking. I sought medical help, and was subsequently diagnosed with Multiple Sclerosis. I shared this news with my parents and…we all started drinking.

I was diagnosed by a specialist who told me I had Multiple Sclerosis, then promptly left my hospital room without another word. This was the first time that the absence of adequate communication left me gutted. A nurse later explained that the specialist had to deliver this diagnosis to three patients that day, and it had been tough on him. At the time, I thought, “Tough on him? He wasn’t the one being diagnosed!” I have become a little more understanding since.

After diagnosing me with MS, the specialist very strongly advised me to avoid stress…so I stopped going to him. Seriously, what is more stressful than being diagnosed with a chronic illness for which there is no cure?

I was also told to avoid fatigue, heat and other factors that could trigger a relapse or further exacerbate symptoms. I was advised against pursuing a career in the hospitality industry because of the stress, long hours and shift work involved.

Holding his hand above his head, the specialist said, “Before MS, you could reach this high.” Lowering his hand below his knee, he continued, “Now, you can only reach this high.” This communication had a disabling effect on me.

Another medical person handed me a list of suppliers for wheelchairs and other assistive devices – after taking me to a showroom in the hospital which had been outfitted for the disabled, displaying modifications that she said I should consider for my home.

Hopes of having the normal life I had envisioned disappeared, and I began to “live” in fear of having a relapse, or doing anything that could trigger a relapse. Any time I had a headache, I panicked thinking it was going to set off another attack. I withdrew, falling deeper into depression that had plagued me from my early years.

Four years after my diagnosis, I was introduced to a series of personal enrichment courses that communicated in a new, positive and hopeful language to me. My life began to change drastically for the better. Once totally withdrawn and suppressed, I now had a bizarre dream of becoming a stand-up comedienne.

A whole new world opened up to me the first time I performed. I felt more alive and empowered than I had ever felt in my whole life. I had taken on something more feared than death itself, especially for shy people – public speaking!

Going back to my first MS attack, I had asked the specialist whether MS could have first reared its ugly head in my life in the form of depression years before the physical symptoms surfaced. He laughed and said emphatically, “No!” I felt my voice was ridiculed. Years later, I was the invited patient speaker on a panel about “Living with MS and Depression”. I asked a specialist in neuropsychiatry, who was also on the panel, the same question. He replied that yes, this was indeed possible and he went on to explain how this was possible.

Following my diagnosis, I had also mentioned my horrible eye and back pain to the specialist. He said, “MS does not cause pain,” and then he spoke about something unrelated. I felt that my voice and symptom had been dismissed. Years later, I was asked to be the patient speaker on a panel about “Living with MS and Pain”. I declined, suggesting one of the other 74,999 or so MS patients be invited instead – in order for different MS patient voices to be heard.

Since those experiences where I felt my voice was not welcomed, I always seek medical professionals who not only listen, but hear what I say; who do not talk at, but speak to me; who do not always have all the answers, but will consult colleagues and other specialists; and who believe patients can be active and engaged participants when it comes to our own health care.

Medical professionals have a powerful voice. Their message carries a lot of weight. Their diagnosis, prognosis, and even answers to a patient’s questions all have an impact on us – such is the respect we regard them with.

Communication between the medical and patient community is so important. Equally vital is the message delivered, and the manner in which it is conveyed.

Each day, the medical community has the power to take away, give, or maintain hope in the hearts and minds of patients, with the words they choose.

People often say, “If you don’t have your health, you don’t have anything.” As someone who has lost her health to MS, depression, a hemorrhaging issue and chronic pain – I believe that, “If you don’t have hope, you don’t have anything.” I have been fighting for my health, my life, and my quality of life ever since I regained hope.

Incidentally, it is now more than 18 years since my first MS attack, diagnosis, and the seemingly imminent prognosis that called for modifications to my home – which were never made. It was then, while hospitalized for a month-and-a-half, that I used a wheelchair for the first and last time. It was then, when I was at my most vulnerable state, that I truly needed patient-centered care, as well as in other instances of ill health when I have received it, with much gratitude.

Patient-centered education will foster patient-centered care…which will lead to better health care experiences and system – for everyone involved.

I thank you for your time. Take care and God Bless.

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