Yesterday as Rich was reading the Sunday paper he said to me, "Here you go. Michigan State is looking for people with chronic illness to team up with a first year student, you should do it." I've heard of this once before but it was a little different. The participants would be sent into the room with a certain disease, which they really didn't have, and the student would diagnose them, as the mock patient recited from memory all the things that were not wrong with them. This new program is much different as the student comes to the house of the chronically ill person and interviews then six times a year in the patients own home. It sounds like a great program. The student gets more personal and actually sees, not only how the patient lives, but the day to day struggles the patient has in their own home, on their own turf. I always say that when you go to the doctor for a twenty minute appointment there is no possible way you can explain what has been going on with you for the past six months in that short of time. Living with chronic illness is much different than that. plus, unless you are really down, you are looking your best when you go to the doc, which looks much different than your daily life and grind. On some days it is a night and day drastic change so having someone actually come to your house sounds like a perfect lesson plan.
Rich and I had a nice day together yesterday celebrating our anniversary. When we got home I was in so much pain I had to sit and pull myself back together so I decided to read the article. Much to my surprise they only wanted people with "real" chronic illnesses like parkinsons disease, cancer, etc. Of course there was no mention what so ever of the over 100 autoimmune diseases that millions of people deal and suffer with on a daily basis. I might add not only suffer with but also do their best to live with and have some sort of a normal life. After I read the article all I said to Rich was,"They only want people with real diseases not the ones like people like me/us who live like we do.
I still don't understand why autoimmune disease is swept under the rug like it is no big deal. My only speculation is that there isn't much known about autoimmunes so it is easier to pretend like people don't suffer as much as someone with a "real" disease. I use to get so mad about things like this but now I sigh. I get sad. I don't understand. It breaks my heart for all the people who suffer from this real pain that can knock you on your butt in an instant. Example: Yesterday after our date we decided to stop at the store to pick up a few groceries. We got inside and I knew it was a bad idea. We walked over to the produce and the pain I was experiencing was so bad I asked Rich for the keys and was forced to go back to the car. I don't understand how diseases that are no big deal to the world can knock you on your ass in a minute or why these diseases are not taken seriously.
I thought about the article for a few minutes longer in silence as Rich did some stuff at the kitchen table. Then I told Rich it always makes me chuckle when people don't care or haven't cared about what we go through between taking care of me, treatments, appointments, loss of life so to speak, etc, but when they get sick or have arthritis they want me to answer all their questions. Annoyed? Yes! This really gets me because I don't understand. Just as the world doesn't understand autoimmunes I don't understand uncaring people.
I wish I hadn't read the articles and this is the reason I don't read the paper or watch the news. Like I said I don't get angry but it stirs up emotions I have spent countless hours working on controlling my mind when it comes to being ill all the time. Hours I have spent finding my peace and just being okay with it all. In the end it is all good. Just another perfect example of how autoimmune diseases are not taken seriously. That's all.
God Bless!
Dianne
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