When Is the Right Time to Tell People About Your Chronic Conditions?


I have a lot of experience “coming out of the closet.” During my sophomore year of college, I came out to my friends and family as a lesbian. I knew what to expect from most of my friends and family members. I consider myself incredibly lucky because most of them were supportive and happy for me.

Since coming out about 11 years ago, I have lived very out and proud. When I was a resident assistant, I’ll never forget one of my residents thanking me for being a visible member of the LGBT community while he came out to me. I was the first lesbian he had ever talked to, the first person he ever came out to, and I couldn’t be happier that he shared this with me.

To me, chronic illness feels like another type of “coming out.” I find “coming out of the medicine cabinet” to be appropriate because I’ve already come out of the closet.

Navigating the right time and way to let people know about my chronic conditions depends on the relationship I have with those people.

Friends/Family — Most of them know because they followed my diagnostic journey via my Facebook posts or I have talked to them about it. While they may not understand how it impacts my daily life, they understand that I have chronic conditions that some days slow me down.

Professors — Well, I stayed after class on the first day to let them know about the accommodations I’d be needing (I had them on file with the office of disability).

Classmates — Quickly caught on by the topics of my master’s degree papers (i.e. “Creation of the handicap symbol vs. the creation of Spoon Theory”) or when I explained to them that I had to sit for presentations.

My rule for coming out to new people in my life (friends, coworkers, dating, future boss): Come out of the medicine cabinet when it’s relevant.

But when is the right time to come out when dating someone new? When is it relevant?

For me, it’s not something I lead with. I refuse to let my chronic conditions rule my life, so why should they rule my dating life?

I’m not going to walk into my first date and have the first thing out of my mouth be “Hi, my name is Mia and I have postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, small fiber neuropathy, neurocardiogenic syncope… and my specialists are still trying to figure out what’s going on with me.” If someone came on that intense, with terms I didn’t understand, I’d run for the hills. It feels like too much personal information, too fast.

So how do I do it?

First dates are meant for getting to know more about the other person and deciding if you want to spend more time with them. Coffee shops are great for conversation and a casual atmosphere.

I’m not looking for a caretaker, I’m looking for a partner — this means there won’t be any medical talk during the date (medical terminology, symptoms, prognosis, etc.). My life doesn’t revolve around being sick all the time, so neither should my first impression.

My life does revolve around the following:

*Fulling my dream to leave the world a better place than I found it.

*Reaching my next career goal

*My two kittens – there are sooooo many pictures of them on my phone. Yes, I’m the stereotypical lesbian with two cats that lives alone… #CrazyCatLady and proud of it!

*Being the best sister I can be

*Being the best friend I can be

I think sharing your medical history/diagnoses isn’t something to be shared with someone you barely know. On a first date, I don’t think anyone (even those without chronic illness) wants to hear someone overshare. I think going too deeply into your life too quickly is off-putting. For example, if your date decided to spend the evening discussing their emotionally painful relationship history (and this is your first time ever meeting them) you might feel uncomfortable.

I will share my medical journey with someone when I know they’re going to be sticking around.

First, I need to know if they’re someone I’m interested in, intellectually attracted to, and emotionally ready for a relationship. I have to assess if they have the qualities I’m looking for in a partner and they need to do the same (that’s what dating is all about). I know what I have to offer in a relationship and I know what I’m looking for (and they should, too). This takes more than a couple of dates to determine.

After I’ve figured out that I like who they are (personality, goals, trustworthiness, etc.), I will bring up my chronic conditions when they are relevant to the person I’m dating. For example, if our plans need to be altered because I have a symptomatic flare or if my specialist has a last minute appointment for me.

I think about telling a new partner like this: When I was first diagnosed — what did I want to know right away? I wanted to know how it would impact my daily life. Your partner will want to know the same. They hear the strange condition names and acronyms for things they’ve never heard before (that have become second nature to those of us that are diagnosed) and want to know what that means for your life as a couple. In order to not overwhelm your partner (or friends/family), I recommend telling them how your conditions might impact your plans with them. Give them the short version and go into more depth as they ask follow up questions.

It doesn’t need to be an overwhelming conversation. I simply let them know that I have regularly scheduled doctor appointments, that I deal with chronic pain, and if they see me sit down somewhere randomly there’s a reason. Anyone I’ve talked to about my conditions usually has a lot of questions and a genuine curiosity about what I go through. I tell them I’m an open book and if they’d like to ask questions, I’ll happily answer anything they’d like to know. I let them lead the conversation and ask questions so I’m not oversharing about my health. I could go on for hours about my diagnostic journey, family history, things that I’ve found helpful, symptomatic days, etc. but I want them to determine how deeply they want to hear about all of it. Over the course of the relationship, they’ll hear most/all of it at some point but they don’t need to hear all of it right away.

Wrapping this all up:

Your chronic conditions do not define you, so they don’t need to define your first impression.

Come out of the Medicine Cabinet when it is relevant to the person you’re talking to.

Don’t overwhelm or overshare. Let your partner ask questions and let them steer the conversation.

Follow me on Facebook at Zebra – EDS and POTS Blogging.

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Thinkstock photo by Ingram Publishing

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