Owning my disease (Or why I chose to self-disclose my endometriosis to my university)

6 February 2015

So if you’ve been reading along, you know that I have endometriosis. I’ve gone through so many emotions and states of acceptance in regards to living with this disease. For a long time now, I’ve developed this attitude that I would not let this condition define me. Endo was just something that I had, a small part of me, not who I am. I was determined that this disease would not control or interfere with my life.

News flash: this disease totally effects major aspects of my life, and is not something I can just tuck away. It’s not something I can only acknowledge when it’s convenient to me.

Most days, yes, my pain is under control. However, it does flair up. The same with my nausea. And those two factors alone can severely interfere with my day-to-day life. It’s everything from what I can wear, to what I can eat, to even how much sleep I can get that night. This isn’t just on the “bad days.” So as much as I don’t want to admit how much of an influence my endometriosis has on me, I really can’t ignore it.

In order for me to truly live my life, I have to own my disease. By ignoring it, or pretending that it really has no effect over me is allowing it to rule over my life unchecked.

I’m choosing not to be on medication right now. Which means each cycle I’m going to experience terrible pain which will likely keep me bedridden. (Ok, let’s be honest, couch-ridden.) I have found myself more often than not, not wanting to talk to my instructors (or employers) before I’m sick because I somehow always believe that next time will be different. I’ll be able to push through it. I won’t be as sick. Then next time rolls around and I am that sick, and I really can’t push through it. And that’s ok. That’s life with endometriosis. I can’t force it to be something it’s not.

I had another choice to make: self-disclose my disease to the university and get assistance. And you know what, most if not all universities have people there who do nothing but help students in my situation. It’s the department of disability services. Now you may be shocked here, I know, because endometriosis is not considered a disability by the ADA. However, these offices help more than what we consider typical disabilities. I now have a record with the university stating that I have a chronic medical conditions — which is exactly what I have. By having this on record with the office of disability services, it shows that I’m acknowledging my condition, the university is acknowledging my condition, and that we’re taking steps together to accommodate for it in a way that my academic life will not suffer.

What does this all mean? It means that now I have a letter to take to my professors stating, without my medical history detailed out, that I have a health condition that may interfere with my ability to come to class. This letter does not guarantee that I will get absolute leeway in regards to absences, but it’s intended to start a dialogue. It also allows some privacy because I don’t always want to explain to every single professor that hi, my lady parts are messed up. On top of all of this, they can help me get a better parking pass or even use a door-to-door shuttle service if I need it. So on those days when I don’t feel absolutely terrible, but am not able to walk to campus, I don’t have to miss class.

It has taken me a while, but I’m finally coming to terms that in order for me to take control over my disease, I’ve got to first accept that I have it and that it does effect my life, and secondly be big enough to acknowledge that and be proactive in setting up accommodations. I can’t treat endometriosis as something that limits my life, but more as challenges that I can indeed overcome. I can indeed develop a tool box so that I can still lead a full and fulfilling life. And I have to be ok with the fact that I cannot always do this alone — nor should I have to.

  • I hope your professors are willing to make accommodations!

  • I started a Masters over here in England about 5 months ago now and I disclosed my endometriosis to them too. I was the same as you for a long time – where I just hoped next time would be better, that I’d be able to push through, but of course that’s usually not how it goes. Luckily my last surgery (June 2014) was quite successful, and on top of all the medication I take and diet changes etc that I do, I’m pretty symptom free at the moment and haven’t needed to use it, but it’s nice to know I don’t have to explain it if my endo does flare up :).

    I also just submitted a resume to a potential employer for a summer internship, and I disclosed my endometriosis on it to them as well, even though a lot of people might say that is an idiot move. However, I co-founded an endometriosis network in my hometown and through coordinating that network I have gained a lot of skills that I am proud to display on my resume. It’s pretty nice that something good has come out of all of this disease. Now I’ll wait and see what they say about it…

  • Brittany Belling

    Oh, I can’t even imagine! I have a friend that is going through the same thing and I didn’t realize how bad it is. This post was so enlightening, thanks for this!

    I really hope that going through this process with the university is going to make your time at school a whole lot easier and your life a lot less stressful in general!

    I’ve been on the war path to find some awesome and blogs, so I’ll be following you everywhere (in the least creepy way possible, ha!)

  • That’s really brave of you to own it like that. I really hope your university works with you!

  • It’s great not only that you have decided to own your disease, but also that your school is so helpful and accommodating. It’s hard to remember sometimes that a lot of places will be, if you just ask. I wish I had been so proactive in college. There were days where my anxiety was so bad I could not make it to class. But having to explain my absences was even worse, so I eventually just stopped going. I’m guessing if I had just asked for help like you did, I would have got it!

  • Taylor Magnussen

    Thank you for posting this it’s really nice to hear how other’s are dealing with it. I currently have been struggling with whether or not to tell my University about my endometriosis and if there was really any services they could offer. Thank you for reminding me that it doesn’t have to define me and it is a challenge that I can overcome. I appreciate you sharing your experience.

    • Hey Taylor! I definitely found telling the disability services office a lot easier than having to explain it to every single professor. With my university, they give us a letter saying that we have a disability on record with the university and what accommodations we need. For me it was leniencies on absences. This semester, all of my professors have been truly amazing about it. I think it also helps that I keep my GPA up in all my classes too.

      Anyway. Hope things go well for you at school and that you have more good days than not!! <3

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