Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.
I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…
If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.
You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.
YOU are rare.
We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease” and “spoonie.”
Article also published on The Mighty.
Kathleen from Creating Through the Pain shares a heartfelt account of how her God-Father guided her after diagnosis:
Pain wouldn’t be so bad, if it didn’t hurt so much. My Godfather said these words of comical wisdom (he had many) at the end of a particularly grueling physical therapy session after my initial diagnosis of Reflex Sympathetic Dystrophy (RSD).
He made me laugh when the best I could do was a grimace. Once I started laughing I could not stop until my body doubled over my walker and I had tears in my eyes. I am sure people around me thought I was losing it! But I think that the irony of laughing amidst all that pain just set something off in my head.
I am very competitive and since I was lousy at sports (yup, I was the one always picked last for gym class—but I’m not bitter…maybe a little), I focused on academics. That competitive part of me kept climbing higher on the corporate ladder and…
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I got my blood work results back this week and all tests came back normal. So why was I so upset to hear the news?
The recent panels show nothing is being naughty in my blood cells and results show my organs are all comfy in here. So why no party hats? Although, in no way do I want another chronic condition whatsoever (seriously), feeling bad and having no answers is a horribly frustrating experience! My tests showed negative for problems, but I am still POSITIVE for being sick.
I have felt these “new” symptoms for over a year now. Negative blood work results don’t stop the symptoms, and it drives me crazy that there is no name, or treatment, or plan, or PROOF… which I feel are owed to my body.
Waiting for a very long time for the proper diagnosis is something I’m not a foreigner to, unfortunately. Maybe that is why this is bringing up such strong emotions like: AAAHHHH!!! and: GRRRRRR!!!!!!!!!! Been here, done this, bought the t-shirt, a poster, a hat, and a handmade trinket from a hippie chick on the sidewalk (aahhh, I miss concerts).
Not sure where to go from here… The last 10 years, then ESPECIALLY the last 3, now adding on this past year of this new sickie stuff, my feeling about the medical world in general is a Negative Result. Rate your pain 1-10? How about, “rate your trust in my ability to treat you?”
Giving it up to the Great Healer. To the only One who truly knows how I’m really feeling right now, and who I CAN trust with tomorrow.
“I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.” Genesis 28:15
Jesus said, “Now this is your time of grief, but when I see you again you will rejoice, and no one will take away your joy.” John 16:22