No one really sees me
They see what they want
I feel what everyone, can’t see
I sometimes even forget
how my symptoms can fluctuate from day to day
When my symptoms are visible to others,
they wonder why
I’m not doing my normal things
You know all those things, that they call little things
When my symptoms are visible,
they wonder what’s wrong as if my disease was a cold
As if I take meds so now I’m cured
They look at me and see no visible problems
I wish you could touch me
and feel all that I feel for a moment
then maybe you could understand
I wish you could feel
The pain
The unsteadiness of my body
The chaos in my mind
The numbness in my feet
The fatigue that weighs me down
The self-doubt and hatred
The madness I dream
The darkness that haunts me
The straight destruction of my body
I wish just for a moment
with a touch
you could feel all I feel…
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I’m glad to see you writing about this and sharing it with others. You are not alone in your experience of the world.❤️
Thank you, I know a lot of people can relate. Having an invisible disease, which is very hard to live with, being able to write about it and share so others don’t feel so lonely.
❤️
I can only imagine. No one can know how you feel, but I imagine that expressing it in poetry might help. My daughter has lupus, which is also “invisible.”
Do you know the poet Julie Stevens? She’s on social media as Jumping Jules Poetry. She has MS, and the proceeds from all her books go to the MS Foundation (Trust?) in the UK. I really like her work.
Beautifully expressed, our hidden illness and our hidden emotions.
Thank you. Yes, it’s so hard to constantly be invisible all wile living in hell
Mind if I reblog? My girlfriend suffers from Ehlers Denlo syndrome, it reminds me of what she goes through. Thank you for sharing.
Share? Of course
Quite informative!
Your poem strums chords—high and low. I felt as if I were granted a fleeting, yet profoundly intimate glimpse into your world—something many poems yearn for. Thank you for this.
Thank you so much
This is truly beautifully expressed. When I can’t explain what’s really going on with me for the simple fact, I don’t look sick, I wanna recite this. Maybe they’ll get a glimpse. You’re beautiful and you’re not alone.
Thank you so much, friend. I can’t, either. I find it easier to just say I’m fine or I just don’t feel good. It seems if I try and explain or give them the symptoms I’m currently dealing with, they look at me like it can’t be that bad, very frustrating.
Thank you for sharing your illness with us.