Saturday, September 12, 2009


My first week of school is now over. It was pretty stressful. I started all six of my classes and also started work on Friday. I decided I would make this post about something that also made my week more stressful.

At my university, I qualify for disability services. This is something that I struggled with all last semester. I did not want to be stuck with the label of "disabled" when I could still move around and was able to get just about everything I wanted done. My first major flare did not hit until last semester, and after that, I realized that I should have something in place in case I ever feel so sick again.

With my disability accomodations, I am eligible for leniency on absences, extra time on assignments and extra time on tests. I doubt I will need extra time on tests, but the disability office put that on there just in case. I have to get all my professors and discussion leaders to sign a paper saying they understand I have a disabilty, although they do not know what it is, and will give me these accomodations.

Having these services is something that I do not want. I hated asking my professors and tried to hide the sheet so that none of the other students would see it. I guess I'm afraid of being stigmatized. But, at the same time, I realize that this is something I need. Even now, I am up at 7:20 in the morning because my joints ache from running around so much this week.

Can anyone else relate to not wanting a label?


Miz Flow said...

I relate. I also had to register with my college's disability services. I'm not sure how it works for you, but at my school, I have a disability coordinator who, with myself, creates a letter that outlines all of the accommodations that I may require (similar to you, leniency on assignment due dates, abscences, etc). I get as many copies of this letter as I have professors, then I hand them to each prof. I do not write my tests in class, I write them in the "test centre", where it is quiet, I can take breaks, etc without being distracted or distracting others. Other people in my class became wise to me as I was always leaving the room during tests.

I also felt like I would be stigmatized, however when others saw that I was getting great marks, I was smart, and knew what I was talking about in class, that pretty much took care of that issue. But whenever it's a new class/semester, you always have to start from scratch.

Good luck with school...and don't work too hard! (you know what I hard...but don't work yourself into a flare. Nothing's worse than a mid-semester flare)!

--"Miz Flow"

mellzie19 said...

Thank you so much for your comment. I have been reading your blog for a while and I find it very inspirational.

At my school I used to have a coordinator, but this year they got rid of my coordinator because I am generally a good student and can speak up for myself when something is wrong.

I also have testing accomodations, but I am not sure that I want to take them.

I will do everything in my power to avoid a mid-semester flare. My lupus is not under great control, so I have to be very careful. That is why I am watching Law and Order on a Saturday night wrapped in my snuggie lol!

Kelli said...

Hi!! My daughter was just diagnosed with Still's Disease. We applied for accomodations (Leniency on absences and audio taping if she can't get out of bed) and they were both denied.
What did you have to do to get your accommodations? Would you recommend taking in all of the results of the diagnostic tests? This was so frustrating!!

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Kelli said...
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Melanie said...

That's baffling that your daughter's school would not allow for those accomodations. My school required documentation from my doctor. The letter said my diagnosis and how it effects my body. Then I had to meet with a counselor and tell them what accomodations I thought I needed. They reviewed it and got back to me and gave me what I wanted and some things they thought would be beneficial. I would try to get your doctor's rheumatologist to speak to them and tell them it is unacceptable. Can you get him or her to call the office? Let me know how it goes.