How To Disclose An Invisible Illness

I have a strong love-hate relationship with the invisibility of my autoimmune disorder. It often allows me to slip, undetected, into everyday life and operate under the guise of normalcy. I can have conversations free of pity, establish myself as a strong individual, and unite over my similarities with others rather than feel isolated because of my differences. But, there's a darker flip side to this invisibility. A side that has grown increasingly more concerning the older I've become. 

Humans are highly visual and tactile beings. They believe what they can see and touch. In fact, it is well known among marketers that highly visual or experiential campaigns garner better recall than if someone simply hears about a brand or reads an article. It is this same innate tendency towards "seeing is believing" that makes having an invisible illness so damn difficult. People don't understand what they don't see and because most with autoimmune disorders have symptoms that are not easily seen like a cast or a scar, the path to understanding often seems insurmountable. 

More than that, is the fact that many, include yours truly, are often not believed. I remember vividly when I first became ill, being psychologically evaluated multiple times by school therapists to ensure I wasn't trying to "stay home sick" for an extended period of time. To this day, that still makes my stomach churn. I was throwing up all my food. I couldn't walk down my driveway. I wanted desperately to be a normal teenager and yet the validity of my symptoms was being questioned. When I first started working, it was challenging to divulge that I turn into an autoimmune cinderella by 6PM in the speed of NYC work culture that rewards late nights. But after a lot of work and education, I’ve learned how to share my autoimmune challenges in many aspects of my life without feeling like I’m giving up anything.

So, how do you disclose an invisible illness without the judgement? How do you ensure you can still maintain a sense of self in your community beyond your illness? How do you find strength and confidence in your disclosure and most importantly, have the energy to balance all of the above physically and mentally? 

There's no right way. Every person dealing with an invisible illness is unique and needs to determine when, if ever, is the right time to disclose. This is what has worked for me, but it took me a long time to come to the point where I realized I needed to ask for the right accommodations to be my best self professionally and personally. These are a few tips I hope will help you as you determine your disclosure: 

WORK

• Know The Law: Under the American Disabilities Act, anyone with a disability has a right to "reasonable accommodations". This means that when you speak with HR confidentially about your illness, they are required to work with you to an extent on accommodations to make work easier for you to handle. I’ve also seen this called an "alternative work arrangement" and it has been immensely helpful for me to balance my disorder and workload. You can dictate who you want told that you have one. I have found for me, it's best to share with my manager but no one else really needs to know.

• Choose Your Balance: So how much should you share with your coworkers? It can be a fine line between getting them to understand and still having them view you as entirely capable (and hopefully more than that!). My general rule is, when I'm not feeling well, I let my team know. I don't go into the nitty gritty details unless absolutely necessary but doing so has allowed me to take down my mask a bit, live up to the transparency I ask them to have with me, and create trust.

• Plan for Appointments: Managers don’t love surprises. I say this after being one and being surprised by one too many “urgent appointments” followed by company departures. I’ve found the best way to ensure you can make your appointments whether that’s therapy or a gastroenterologist is to plan in advance. Ask your manager for a set time once a week and put it on their calendar so they know what’s happening. When you plan, they can plan for your absence and it makes the process way easier and less awkward.

SCHOOL

• Establish a 504 Plan: In Section 504 of the Rehabilitation Act which is civil rights law, there are rules that prevent the discrimination of someone with a disability in a school setting. A 504 plan is different than an IEP in that it doesn’t provide specialized instruction or a separate classroom but rather allows a student to make accommodations as needed to best learn from instruction. My 504 plan allowed for homeschooling while I was on tube feeds, extended time on exams (hello puking during the ACT), and extra sick days. Usually a physician’s note is required to put a 504 into action but they’re an important tool to ensuring education accommodations. I’m lucky enough to have two parents who are lawyers who knew about this plan but if you have any issues it is within your rights to have a lawyer advocate for this plan.

• Find Advocates: School, whether elementary or graduate, can be a difficult place for someone with an invisible illness. Children discover that the nurse is a way out of class or that extended time can help them get ahead and many abuse these accommodations. This is why you’re required to have a psycho-evaluation when establishing a 504 plan— to ensure you’re not faking it. Even when you pass, there can still be professors and students who don’t believe you or think you’re getting special treatment. This is incredibly difficult on a student and their family. Find advocates who are your champions if possible and disclose to them more than the rest. They will help bolster you. Shout out to Nort Seamen, the most incredible principle who was my ultimate champion in high school.

TRAVEL

• Plan Ahead: Call the hotel, Airbnb, or wherever you're staying and let them know that you have a disability and will need specific accommodations. Call prior to booking to see if they are able to accommodate. Most hotels and airbnbs will be happy to set you up with minor tweaks for no fee and you can rest easy knowing your needs will be taken care of upon arrival. If they can’t, then you know to plan your stay elsewhere or bring certain self care tools to ensure you’re taken care of.

• Tell Your Fellow Travelers: I once had a particularly harrowing experience coming back from a Chicago business trip where I promptly passed out on the man next to me. I didn’t tell my colleagues as I hobbled off the plane and could have used their help desperately. You don’t need to divulge every aspect of your illness but if you have any special needs while traveling, let your fellow travelers in a little so you can remain comfortable. I promise they will not see you as weaker or less capable and if they do, find new friends or a new job. Everyone has their weird travel things so you sharing what you need will likely provide a closer connection to your fellow travelers.

• Call The Airline: I can't stress this one enough. All U.S. airlines are required to provide reasonable accommodations for those with disabilities. Traveling is immensely stressful with an autoimmune disorder, so call ahead, explain your situation, and bring a doctor's note if necessary. Delta is particularly amazing with this and always will place me in an aisle seat so I can get up and move often to keep my blood flow normal during a flight. Below are the links to most major airlines disability lines/requests:

  • American Airlines

  • Jetblue

  • United

  • Southwest

  • Delta

FRIENDS

• It Doesn't Need To Be The First Conversation: While for some of my friends, this has been close to the first conversation, for many, they knew me for a long time before I disclosed my illness. Illness can be a total drag, and starting a friendship off with a heavy piece of information like that can open the relationship on an extremely serious note.

• Understand The Friend Circles: If you’re like me, you likely want your invisible illness to stay invisible most of the time. I view disclosure in the context of three circles.

  • The Immediate Friend Circle: My immediate circle are the friends I’d call over if I was feeling shitty to help out. They’re the ones who I trust implicitly and are there for me always. When you’ve entered this circle you pretty much know everything about my illness. Outside of that, is the tangential circle.

  • The Tangential Circle: These are friends who I like hanging out with but don’t necessarily rely on. The “good time” people who I find it’s easier to do less explaining because they don’t have a huge impact on my lifestyle. Finally there’s the acquaintances.

  • The Acquaintance Circle: Unless I’m doing something where my illness directly impacts our meeting, I won’t disclose. Understanding these tiers and being selective can make the process way easier.

• Remember They’re Your Friends: The most challenging part for me of disclosing my invisible illness with friends is that I don’t want them to view me differently. I don’t want to be less “fun” or involved because I now have a label too. Remember, anyone worth being your friend will accept your disclosure and stand by you so use it as a way to weed out the bad eggs and focus your energy on making the best friendships possible.

There are a million other scenarios that will require you to choose whether or not to disclose and it is entirely your choice. Remember, disclosing an invisible illness does not make you weak or a complainer. In fact, it demonstrates a strength that shows you understand what you need to best function in this world and that’s a lot more than most people can say.

I encourage you to open up when you feel comfortable enough to but remember it will never be fully comfortable to disclose and there’s never a perfect time. Wishing you calm and ease in your disclosure and hope these tips were helpful.