Dear Healthy Friend,
Written by: Amanda Phillips
I know I say no a lot. I know that sometimes, when I actually do show up, I seem exhausted or distant. But when you stop inviting me, it hurts more than you could ever know.
That would feel as though you are saying my presence no longer counts, my struggles make me not worth your time. You may have thoughts of sparing me that pain of having to say no again, but most of all I feel the absence deep down inside—your connection, laughter, and the normalcy I long to have.
It's like living in a body that is continuously hijacking your plans. Pain, fatigue, and symptoms of many kinds wear one down each day; joining in can be hard. But the worst pain? The loneliness.
When I'm not included, I start to feel like I'm no longer part of your world. You are moving ahead with your life—celebrations, dinners, and weekend plans—whereas I am off to the sidelines, increasingly isolated with each missed event. I miss being invited, even when I must decline. I miss feeling a part of things.
You perhaps think I will refuse again, and indeed I might. But the invitation itself is something. It implies that my sickness has not made me invisible to you. It suggests, it allows me, to believe a day will come when I am well enough to take up the invitation and be myself for a little time.
And when you stop inviting me, you do reinforce the idea, however inadvertently, that my illness makes me a burden, that I am somehow less because of it. And that is a thought with which I already struggle with every single day.
So please, don't stop asking. Don't stop believing that one day I will be able to say yes.
- Tags: Autoimmune Disease Chronic Illness Disability Fatigue Mental Health Patient Advocate Self Care Spoonie
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