Awareness and Denial

Today is World MS Day, meant to bring  awareness to the disease and how it impacts the 2.5 million people worldwide who have been diagnosed. Multiple Sclerosis is an autoimmune disease affecting the central nervous system, with symptoms ranging from numbness, to blurred vision,  loss of balance and motor skills, nerve pain, and weakness and fatigue. People with MS also frequently suffer from depression and other emotional changes. MS is sometimes compared to faulty wiring; holes in the protective myelin sheath surrounding our nerves cause misfires in the signals our brains send to the rest of our bodies, resulting in a wide range of symptoms. Rates of progression vary greatly and no cause or cure is currently known. Primary progressive MS usually follows a relentless continuous path of declining function. Relapsing remitting MS advances in no predictable way, with each relapse worsening myelin damage in different parts of the brain and nervous system. 

Unfortunately for those with “invisible” symptoms that come and go, denial is pretty common. I don’t necessarily mean denial about having a chronic disease, although that certainly happens, too. When taking a job, starting a relationship, or meeting new friends, the question of if and when to disclose having MS is a struggle for many, and for some, the diagnosis remains a secret. The empathetic response that occurs automatically is a small part of this reluctance to share. Some people know someone with MS, and their experience may be the only knowledge they have of the disease. Others may not know anything about the disease, but sclerosis is a terrible-sounding word, and multiple just makes it seem that much worse. The abbreviation detaches the disease from the meaning and softens the delivery, as long as the other person knows what it stands for.

I experienced my first symptoms of multiple sclerosis in 2005 and was officially diagnosed in 2008. For most of the time since, I’ve managed well with disease modifying treatment and maintaining certain routines. In 2011, I suffered a relapse that affected my motor functions for the first time. The left side of my body became sluggish, and it was difficult to pick up my foot to walk. My hands felt arthritic, and my left hand was nearly unusable. The loss of upper bodily function rendered me unable to work. I scheduled an emergency appointment with my neurologist and received a steroid IV. Both my upper and lower body motor functions were back to normal within a few days, but it took two months for my symptoms to completely abate. 

This experience opened my eyes to the reality of becoming disabled; the loss of motor control and movement was sudden and unexpected. Then, and maybe even now, I was in a state of denial about the possibility of becoming permanently disabled. It has taken me a number of years to accept the unknowable, and to become more comfortable and open in telling people I have multiple sclerosis. I no longer worry about sharing my diagnosis, but as long as the MS Society offers workshops for job-seekers to discuss if, when and how to tell an employer they have MS, society can’t reach a state of full awareness. Attaining worldwide awareness will happen when denial ends, acceptance begins, and people with multiple sclerosis no longer fear saying its name. 

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