When I Hear 'At Least It's Not...' About My Chronic Illness

When you’re ill, particularly chronically ill, you’re inundated with advice from well-meaning family, friends and even, on occasion, complete strangers. I thought I’d dedicate this post to the one that seems to be a favorite of the well-meaning brigade, and one that really ticks me off.

“Well, at least it’s not [insert disease or life circumstance of choice].”

I have yet to work out how this is helpful to the person being addressed. In many respects, it assumes the person has lost complete perspective and is simply overreacting and whiny. Unless your head is so fully up your own bum that you couldn’t pry it out with a crow bar, you know that there are worse things in the world.

No one is immune from loss and illness. We all have tragedies in our lives. Unless you live under a rock, you know there is suffering around the world in the form of war, violence, famine and natural disasters, every day. On a smaller scale, there is the personal loss of loved ones and unexpected health and life crises. For myself, I’ve worked in palliative care. I have worked with women who’d survived the atrocities of the war in The Balkans during the 1990s. I have lost deeply loved family members. Like most people, I understand there are people enduring far worse circumstances than my own. You really don’t need to remind me.

When you give me the “at least it’s not…” line:

• You are being nothing short of dismissive and trite.
• You are negating my experience.
• You are telling me that I have no right to what I’m feeling.
• You are telling me I have no right to express that feeling.
• You are telling me to be silent.
• You are telling me my distress is unwarranted.
• You are making me feel guilty.
• You are making me doubt myself.

Is that really helpful?

Does it provide any solutions?

Any useful advice?

The simple answer is no.

Suffering is as individual as those experiencing it. What one person can bear another will find an overwhelming burden. How can you compare such a personal experience? I know other people are suffering and that for some, their suffering is beyond intolerable. That doesn’t stop me, or any other person, from feeling overwhelmed, or scared, or sad, or lost, or angry, or any of the other million emotions that arise with chronic illness. It doesn’t mean I don’t need support. It doesn’t change my circumstances. It doesn’t make my suffering any less real. And it doesn’t mean I think my suffering is worse than that of another. But it is mine alone and its salience can only truly be interpreted by me. Where is that line in the sand that says, yes, you finally have suffering worthy of complaint? And who decides what the line is?

The reality is, whatever anyone’s life circumstances, be it illness, loss or otherwise, there will always be someone, somewhere whose experience could be classified as worse.

Negating or silencing someone’s experience is not an act of kindness. You do not need to understand someone else’s experience to be able to show compassion. To let them speak their truth. To let them release that burden so they can start to pick their feet up once more and take the next step. Compassion costs you nothing, but it’s priceless to those who receive it.

Chronic illness is a long and often frustrating journey. It has no clear parameters. Some days it is better, some days it is worse. Often you can’t predict when either circumstance will occur. We experience loss in different forms, jobs, life roles, financial, social, our sense of self. We experience pain both physical and emotional. We have plenty to deal with. Why should we also be made to feel we must justify our right to feel upset or overwhelmed?

I, like most patients, know in many respects I am lucky. I count my blessings each day. But the days it gets too much and I’m barely holding on, a kind word or a listening ear is what is needed, not a reminder that others have it worse. Think about what you’re truly saying when you utter those words.

A version of this post originally appeared on Living With Bob (Dysautonomia).

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