Disclosure: A Delicate Balance

As someone with a number of chronic conditions including hEDS and POTS, I have struggled for many years with the effects of my symptoms on my daily life, always wishing there was something I could change in order to help mitigate symptoms during various activities including school and choir. I was not officially diagnosed with these conditions until my senior year of high school, so unfortunately, without a diagnosis, there wasn’t much anyone was willing to do for me. Now, I have been using accommodations through college for a few years, and it has been a constant trial and error process of how to approach conversations about my accommodations and conditions in different settings. One of the biggest continued anxieties regarding my conditions is how much to disclose to be taken seriously without oversharing. 

My symptoms, characteristic to these conditions and many chronic conditions, are dynamic, so I often do not need to utilize my accommodations, but they are an important tool to have in place for times I do need them. This is something I struggle, even now, to convey to my professors when I disclose. According to my school’s disability and accessibility office, even though they distribute letters describing my accommodations to my professors, they say it is my responsibility to arrange a time to discuss the use of them; however, this is a difficult, complicated, and frustrating process for those with dynamic disabilities because they might not know when or how they will need to implement their accommodations until the moment arrives. 

Having gone through the disclosure process numerous times now, I have refined my speech, yet I still struggle to convey the seriousness of my conditions and therefore my need for accommodations while also explaining that symptoms, such as passing out, are just my normal and not a need for concern or emergency. Personally, I feel it’s important to stress the level of severity of my conditions in order for professors to believe that I do in fact have the health issues I say I do. Most people look at me and see an excelling college student. In reality, I work very hard to minimize the effect and the perceived effect my conditions have on my life. To me, these symptoms are not severe or concerning because they are my daily experience, my normal, but to a person outside of the chronic illness community, I have to quantify the abnormalness of my normal in comparison to others in order to be believed that my normal is different than other people’s normals. A common reaction I get when during my disclosure, especially about my tendency to faint is shock, concern, and oftentimes, fear. I feel this reaction is people’s response to their own lack of knowledge on the topic, resulting in prescribing a level of severity to the situation that is not necessary. To try and ease this response, I often feel obligated to downplay the severity of my conditions by responding with statements such as, “Most of the time it isn’t a big deal and won’t be a situation that will arise as I have learned how to mitigate symptoms.”

Disclosure is a delicate balance between disclosing enough information to be believed and safe in the situations one faces and not oversharing information that is not pertinent to getting the help one needs to be successful. Due to the nature of these conditions, this will be different for every person and will vary depending on the situation or setting. For example, I am a chemistry and biology double major and work in many laboratories that involve work with dangerous chemicals, so I choose to disclose the exact nature of my conditions, specifically my POTS, to decrease the safety risk for myself and others. I do not disclose as much information in other circumstances. This will continue to fluctuate as I enter different roles in my professional future and will look different for people depending on their circumstances.

I prefer to disclose in person as I find it easiest to facilitate a conversation, but I usually preface with an email arranging a meeting time. As an idea, this is the outline I use when disclosing in-person that can also be adapted for an email communication as well.

Disclosure MadLibs 1

Hi! Do you have a few seconds to talk about a personal matter regarding health accommodations? 

• If yes, then continue. If not, establish a time to discuss in the future. 

I have multiple dynamic, chronic health conditions that impact my life in different ways. Some common symptoms I have are ______, _____, and _____. They vary in their severity depending on the day. I know my body well, and most of the time, I can mitigate my symptoms to avoid them getting too bad. Sometimes, even when I do everything right, I can’t avoid having a flare up when my symptoms get really bad. For these cases, some accommodations that are helpful are _____, ______, and _____. They help me by _____ and ____. 

• For some more obscure accommodations, I will address them specifically why they help.)

What is the best way to implement these in (insert setting)? 

• Have a discussion about how to implement them, but do not settle or compromise or leave the meeting without establishing what you need. 

As I said before, my symptoms are ever-changing, so if a new situation arises, can we revisit this topic and discuss further ways to help me succeed in (insert setting)? Thank you so much for your understanding and collaboration with me on this!

Disclosure MadLibs 2

I have a condition called [insert condition here]. This means that [insert one medical diagnostic criteria of the condition]. Generally, this manifests in [insert some general symptoms that impact activities of daily living here]. When I am singing, this manifests as [insert some symptoms that impact your experience as a singer]. To work around my symptoms, I [insert some techniques that you do to work around symptoms]. So, when I’m singing, I may [insert techniques again] to manage [insert symptoms that impact your experience as a singer again]. This isn’t because I am [insert common misconception about people with your condition]. This just makes it possible for me to manage my symptoms while doing something that I love.