The most frequent phrase patients hear when conversing about their illness is, "but you don't look sick!" I've personally heard this phrase from family, friends, strangers, and even doctors! While that is a lovely compliment meant out of pure kindness, I have often times wondered just what illness is 'supposed' to look like anyway? The truth is illness comes in many shapes, sizes, and forms, and often times is simply hidden, only visible if you take a deeper look. It isn't invisible like most observers believe; it is just carefully tucked away so the patient can live a more normal life -- without the constant reminder of their disease. A coat of make-up, a wig, and a cute outfit helps us feel more confident in our failing bodies, and seem more approachable to those around us.
Take to social media and post your side by side photos with the hashtag #invisibleorhidden
Video Disclaimer: http://thetubefedwife.blogspot.com/2016/04/illness-should-come-with-disclaimer.html
This video hit home for me. My 10 year old has Pulmonary Hypertension. I have heard MANY times "she doesn't look sick".
ReplyDeleteShe has a pump attached to her body 24/7 which we put into a backpack or a belt under her clothes. When she's playing with healthy children she can often be found on the sidelines taking a break because she can't keep up. When she's having a "PH day" she's inside receiving oxygen or sleeping because her body is worn out.
So you're right. The illness isn't always noticeable, it's there behind the smile.
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ReplyDeleteA fellow ME/CFS friend shared this video that was on The Mighty on FB. Thank you for spreading awareness of this concept. I'm always conflicted whether I should try to look good and "hide" my illness if I have the energy to do so. It's also very hard for healthy individuals to grasp chronic illness as well. I suppose it would be for me if I wasn't affected by several of them. We have better days (doesn't mean we're spontaneously "getting over it") and worse days. Such is life, and hopefully better treatments and cures will come. Til then, one must make the best of their life. Prayers and love to you, Chanel!
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ReplyDeleteLove THIS!
ReplyDeleteYou put words to my thoughts;-)
From a
Tube fed mom of 4
Love THIS!
ReplyDeleteYou put words to my thoughts;-)
From a
Tube fed mom of 4
I saw this on Facebook just now and I had to reach out and let you know that I'm praying for you! You're amazing, beautiful and even though I don't know you, somehow I'm proud of you. I can tell you're strong and that you'll fight through this. God bless you Chanel!
ReplyDeleteYou may know this already, but diphenhydramine, commonly known as benadryl, is an anti-nausea medication. Perhaps you can take some before your treatment as it is also an antihistamine? It might make you feel better.
ReplyDeleteRelapsing/remitting MS here. I don't look sick until I fall over or can't walk in a straight line due to left side weakness. Then people assume I'm drunk.
ReplyDeleteChanel, you don't need that wig, you look stunning without it. Honestly.
Wondering if you are able to eat any food by yourself through your mouth????
ReplyDeleteYes I am able to eat small amounts of soft foods that are easy to swallow and digest :) For about a year I was NPO though.
DeleteChanel,
ReplyDeleteI'm fighting with autoimmune disorders myself and hear the same thing frequently. I've been scoffed at by men who don't understand why I don't pick up boxes or bags for my wife. They don't understand why I don't open doors.... Or why I won't shake their hand. It hurts more than I can describe.
When I was in a very bad car accident, I'm now in a wheelchair. It's very obvious to me now how people use visual cues to decide to how to treat someone. Its heart-wrenching.
I'm very impressed in how you are using your illness as a way to help others and educate those who are completely unaware.
I'll be sharing your story with everyone I can.
Thank you
David