Sunday, August 2, 2015
I read this article ans felt so connected. This person definitely has a similar experience and philosophy to mine. Read this. Learn things.
It's so reassuring to not feel alone, even just from reading a stranger's article online. I know I'm not the only one. There is amazing comfort in that.
I want the people in my life to read this list and really pay attention. It speaks some hard truths, but a lot of us spoonies need people to become informed. So my wish is that you'll read the list AND my personal comments which may apply to some spoonies, but definitely applies to my life. The article is linked above. Below are a few of my personal thoughts with the corresponding point from the original poster's list.
Whatever pain I am in, people underestimate...? That does sound accurate though WHY. I'm going to need you to overestimate how much pain I'm in. It's unbearable. Consciously remind yourself. No matter how bad I tell you it is, I'm trying to be tough and push through and downplay it.
Become familiar with the spoon theory. Speak to me in that language, ya know asking if I had to borrow a spoon from tomorrow to get this done.
I go to Frederick, and Philly, and NYC for doctors that understand and care about me. This is normal.
PLEASE PROMISE to never again tell me I don't look sick. It's not a compliment. Also, if you feel compelled to tell me I look good, just mean that I look nice. Don't make it, "you look good...you must be feeling better!" That's not how it works. I have an invisible illness, invisible means can't be seen. I have a chronic and incurable illness, this means I will never get better.
6. We Don’t Ignore You
Pain and being sick and Blaze consume my thoughts. You can call me selfish if you want, but after my health and Blaze, there's little room for much besides my family. It's not personal.
14. We Don’t Want Your Medical Advice
It's thoughtful when people do research cuz they care. It's annoying when people assume some fad diet or exercise will be a cure all for any medical thing without knowing what's wrong with me.
Sometimes pain demands sleep and tears. And that's all that can be done. It sucks. But it can't always be helped or lessened.
12. We Don’t Have a Job for a Reason
I wish I had a job.
13. We Don’t Want Sympathy, We Want Acceptance
I wish I had acceptance.