WHAT CAN'T BE SEEN

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“…Most of all,

I longed for my struggle to be seen and understood.”

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It was decades ago that I first succumbed to an invisible illness: depression.

Although I was suffering greatly, I learned quickly that many people can’t understand what can’t be seen.

I remember trying to explain my sadness to my father. He told me that I was always smiling in the family photos and photos do not lie.

However, I think of how we urge my grandson to say “cheese” whenever the lens turns his way and I know that smiling is no barometer of mental health.

I experienced my first suicidal thought in 1988, when I was 22. It was a visceral shock when I realized no one could see what was ravaging my mind. A divide opened between me and the cozy family-oriented life I had known. When it became too difficult to pretend I was okay, my loved ones would try to reach me, urging me to sit up, smile and act normal.

At 24, I moved almost 1,000 kilometers away. It was as if I knew instinctively that to deny what was happening was to harm myself: something that was borne out many times in the following years.

Later that year, I got food poisoning. Although months of intense pain and nausea finally eased, I never fully recovered. I learned the difficult lesson that even medical professionals can be ignorant about what they cannot see.

Despite my parent’s disapproval, I was referred to a psychiatrist.

I spent the next years fighting: a guinea pig for all sorts of anti-depressants that alternately saved and nearly destroyed me.

One such drug precipitated my first suicide attempt. I learned that I had a treatment-resistant depression: whatever helped at first would stop working in time.

In the worst of my illnesses, despite my longing for connection, I hurt people.

I both clung to them and pushed them away. I hurt.

Most of all, I longed for my struggle to be seen and understood.

I was diagnosed with major depressive disorder and, eventually, a dissociative disorder. These diagnoses brought me no great peace because I was unable to talk about them. I was a scientist, and my mind - the bastion of logical thought - had betrayed me. I was ashamed.

In 2002, I was diagnosed with an autoimmune disease called Sjogren’s syndrome, which explained the complex symptoms that had plagued me since I was 24. Sjogren’s affects the moisture-producing glands of the body. Apart from systemic dryness, Sjogren’s can cause severe fatigue and joint pain and, among other things, damage the major organs of the body.

Getting a diagnosis for my physical struggles, although reassuring me that it wasn’t “all in my head”, didn’t bring the help I sought. My Sjogren’s was treatment-resistant too. The treatments I’ve tried have often caused a crisis with my depression. Recently, I’ve learned that depression may be an innate part of Sjogren’s, which may explain why my physical health seems inextricably linked to depression.

All I can do is manage the symptoms.

For me, there is no hope of a cure. Yet hope is what keeps me going.

Hope in the moments of joy that are our lives. While I struggle with illnesses that sap my strength, my mind and my life, I am lucky to share life with someone who understands my struggles.

On days that I’m too tired to move or find my joy, knowing that I am loved gives me the strength to keep going.

Nobody chooses illness.

Many people, young and old, spend their lives fighting invisible illnesses. Nobody can look at us and understand why we talk about managing symptoms and quality of life. The common refrain among my online friends is that no one understands what can’t be seen.

Because of this, so many people with invisible illnesses fight alone.

Although invisible illnesses have stripped me of my health, career, friends and opportunities, they have not taken my voice. All the time I can illuminate the experience of invisible illness,

I have purpose.

I can speak for those who live with invisible illness, as well as the carers who struggle with them.

Perhaps the pictures of our authentic selves are not always full of smiles, but they are beautiful nonetheless.

They show our courage, our compassion, and our determination to never give up.

Never give up.

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By Jane Waterman . First Published in Island Gals Magazine . 2013 . Volume 3 . Issue 3

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