Day 12 (April 12) – Hindsight
What have you learned about being a patient/caregiver that has surprised you most?
The two biggest things that I have learned about being a patient is that:
- Medicine is still in the early stages of treatment, and still does not understand many diseases and conditions
- Discrimination and judgement is rampant in society pertaining to many invisible illnesses.
If you would have told me these two points before August of 2007 (initial onset of illness) I would have laughed, or ignored your comments, because I had these sense that doctors could fix everything.You went to the hospital when you were sick or in pain, then you went home a few hours or days later feeling all better. I never knew that there was this entire dark side to medicine that essentially has “no cure” , until I was a statistic on that side… It’s a totally different feeling when you’re on the other side of that line. I can guarantee it.
Discrimination, judgment and ignorance is another issue that I have faced many times over the years, many times it has been from “
family” members, close “ friends” and teachers. Many have preconceived opinions of those with chronic pain, and I have found it very hard to be successful in such a hostile environment. Suffering from an invisible disability subjected me to unfair treatment: Because on the outside I appear completely normal so the assumption is, there is nothing wrong with me; I must be making it up. My reality is that I suffer each and every day and if I could, I would change that.
UPDATE!! I wrote this blog on April 5th, just last night ( April 11th) I heard plans of a meeting with my principal to discuss my three years at my high school… the plus?! I am actually going to be able to attend this meeting :D! Can’t wait to give you more details on this!
PHOTOS: That are not tagged @CHRONICALLYCOOL were found at
Well, before I developed chronic pain, I would describe myself as a major nerd. math, science and band were all my favorite subjects. Studying? used to be my favorite past time. School supplies shopping was a better treat for me than clothing shopping…. but sadly my pain disorder made it very difficult to focus on school work, and attend school on a regular basis. Junior high school was no problem, I made it through without any issues pertaining to my disability.High school was a whole new bag of tricks.. After my first year, I had to get formal adaptations made to my record due to the discrimination from the teachers in my school.Here is a brief over view of the adaptations:
-Extended time for formal assessments
This doesn’t seem to crazy to me?
Anyways, in my second year I missed over half of the school year and still had teachers discriminating against my disability, AND ignoring the formal adaptations made to my file.. one teacher even showed my entire class a video about pain clinics in the south of the US and how they just give out all of these horrible drugs to their patients (which were referred to addicts numerous times throughout the video) and how most of the patients that visit these clinics are actually lying about their condition.
This past year, and my FINAL year in the public school system, I had the worst teacher I have ever had in my entire life… she literally was on the cusp of my mother filing a discrimination suit… She fought me on every single adaptation, outwardly mocked me infront of my peers, and from all of this she exasperated my illness. The worst thing about all of this? She knows what she did, and how much pain she inflicted on me.
I think the common factor in each negative experience with a teacher was not that the teacher didn’t understand the complex nature of chronic pain, I think they didn’t believe me because I could come to school one day, and act 100% perfect, then not attend school for 3 weeks. I also believe personal ignorance played a role in it aswel.
Now, I can say I have had teachers that have made an enormous impact in my life pertaining to my disability. A calculus,english and technology teacher have been my biggest supporters in my journey (isn’t it weird that the only teachers I have had issues with are those is the science fields… Those who have the education to know EXACTLY what is happening in my body ) They have done every single thing in their power to support me in my education.Even though most of these subjects aren’t my favorite (I love biology, chemistry and general science) they have made a huge impact on how I view different fields of teaching.