Should I Hide My Real, Chronically Ill Self From Other People?

People often tell me how well I look. I’ve inherited clear skin and pale blue eyes from my parents; I have chubby cheeks and a light tan. I walk my dog, I swim and I have hobbies. When I bump into older friends and acquaintances they see little change from the confident, spirited, healthy and fit person they remember. New friends and acquaintances see an average 40-something, enjoying life and “looking well.” When looking in a mirror, I see the same thing. I agree to do things, work, meet up, and have dinner. I smile a lot, say I’m well and perpetuate my disguise.

I wear a mask.

Beneath my mask lurks chronic pain, fatigue, confusion and guilt. It’s been like this for the last 14 years. Don’t get me wrong; I have good days, great days in fact, but on most days I feel “ill.” The bad days range from an overwhelming malaise, a feeling of walking against the tide, to a mind-numbing pain (muscle and nerve) usually occurring from my right temple down to my right foot. Occasionally my mask slips and the people closest to me see the “real” me. My husband Nick, father, sister and close friends are incredibly supportive and understanding. Nick and I have our own language on these bad days — he can see that I have “slumped” when no one else can.

I start to yawn as often as I breathe, my eyes hurt, I can’t find the right words and meanings to articulate by mouth what I am feeling. I rub at my neck, my ears ache and ring, the “nodules” appear all over (small lumps Nick describes as paperclips under my skin), my ankle swells, my temple bulges, my hips pop and grind. At this point I have two options: time out to rest or to continue with sensibly paced activities. My mind has warped these two options into “giving in” or “ploughing on.” Usually I choose not to “give in” to my illness and to fight it, which often results in worsening physical and mental symptoms. I can’t help myself. I become sad, angry, resentful, dwell on what used to be, and makes plans on how to change and become more positive. Then I feel a bit better and it all starts again. A self-made spiral of denial. Ups and downs, boom and bust.

I want to be truthful. I think it would help. Since telling a wider circle of friends about my illness recently, I have had many responses. Some people have told me of their struggles, struggles I’d never guessed existed with them underneath their mask. Some people were straightforward in offering their understanding and support; some were emotional. Some people who I thought had known and understood appeared to be surprised. Some people chose never mention it again and so we carry on as before, and some people have edited me from their lives and vice versa. It makes things clearer. But how do I proceed from here?

Should I hide my real, chronically ill self from other people? Pretend to be what they see? Do I risk becoming known as a let-down, a flaky friend who makes and breaks plans on short notice who makes apparently lame excuses? Or, do I tell them, explain about my illness and risk putting them off getting to know me? Recently I thought I was making friends with someone; there was potential for friendship, we have lots in common with each other, but after refusing several invitations to meet for coffee I decided to tell the truth. Honestly I haven’t heard from them again. It makes me sad, and if I’m honest a bit angry.

If I make the decision to let my mask slip and reveal myself, I don’t want your sympathy; I need your understanding.

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