The Loneliness of the Long-Term Diagnosis

Since being diagnosed with multiple sclerosis, I have never been surrounded by so many people (usually of the medical variety) yet felt so utterly alone. Bereft, cast out, somehow ‘other’. Just over a year ago, I was living a fairly normal life, doing fairly normal things. Sure, we all feel different at times, a bit lonely, a bit out of the loop, but with any luck, we soon gather ourselves together and re-join the masses.

Being stamped with an indefinite diagnosis however, permanently removes you from normal society, whether you like it or not. I felt a sense of shame ‘admitting’ my diagnosis to friends and family and was angered at their awkward, embarrassed reactions. Perhaps the slightly musty, old-fashioned image of MS does not help matters, despite it technically being a young person’s illness. Wheelchairs, catheters, trembling and paralysis were the most common words mentioned by my well-meaning friends along with the horror on their faces as they briefly considered the scenario of wheeling me to the park, wrapped in a tartan blanket to feed the ducks.

How to describe the aching loneliness of waking in the early hours of the morning, rigid with fear? Or the recurring thought: This. Cannot. Be. Happening. To. Me. But it is happening, and each new medicine, neurology appointment, MRI scan, blood test and flu jab add another thin layer separating the me now from the me then. My life was tossed up into the air one day last year and as it has fallen back down, there is a new order, a new symmetry and system to my life. Normal life must fit around appointments, fears and anxiety must be measured against reality and worst-case scenarios, and precautions taken.

I have lost friends. They simply peeled away, apologetically. I have made friends with the deep fears in my mind. I have faced up to them, stared them down, but still there is the gnawing loneliness. Or is it simply facing up to life as it really is? Unpredictable and utterly random.

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2 thoughts on “The Loneliness of the Long-Term Diagnosis

  1. desertdenial says:

    Well written post my dear. My favorite reactions from friends are “I’m sorry, I don’t know much about MS”… or even better… “Well you don’t LOOK sick”!

    The biggest struggle is trying to remain normal in body that defies normality. One hour things can be fine and wham… they can change in a second. The loneliness and anger of not being understood because people can’t “see” our pain and difficulties. It’s incredibly frustrating.

    Thanks for posting and reaching out. I am looking forward to hearing your story.

  2. Thank you so much! I know exactly what you mean – it’s often a hidden illness, isn’t it. And the not knowing when the next symptom will strike is pretty frustrating. x

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