Hello dear friends!
One of the most challenging aspects of having any type of invisible illness is just that- it’s invisible. Nobody can tell that there is anything wrong with you based on what you look like, or even after having an in-depth conversation with you. This ability to “pass”, as many people call it, can have its upsides and downsides depending on your individual diagnosis, socioeconomic status, and lifestyle (among other things). Most of the time, this invisibility offers a taste of both sides: the chance to fly under the radar can be both relieving and incredibly frustrating. Freeing yet exhausting.
Often, deciding which of life’s situations call for complete honesty and vulnerability and which ones are better endured with a shut mouth can be an incredibly vexing task. On one hand, all of us crave the connection that only true openness can provide, prodding us to “come out” and live our absolute truth regardless of consequence. But on the other hand, our society is more easily navigated with half-truths- keeping the peace and not offending anyone at all cost. This puts those of us with chronic or invisible illnesses in a tight spot. Do we divulge our diagnosis? To whom? And when is it worth it? When do the benefits of honesty outweigh the benefits of silence?
For me, I struggle with this on an almost daily basis, and that’s coming from someone who doesn’t really get out much. I imagine that for those of you who frequent different places and interact with different people regularly, that this is probably a constant stressor for you. You look one way walking down the street, but feel something utterly different. When and where do you share your story?
This blog has been by far the biggest step I’ve taken in stepping out from behind the mask. You know the one. The mask that says everything’s a-okay, I’m fine, I’m normal, please don’t treat me differently, I’m just like everyone else. And honestly, I think a lot of people are hiding behind that mask. Way more than we even realize, and definitely not just people living with chronic or invisible health conditions. But it makes me ponder: what truths are everyone else around me keeping quiet? And how would our interactions be different if people felt safe to be vulnerable and open with each other? What a different world that would be!
But for now, let’s talk about “coming out of the closet” and how we can support (with non-judgment I might add!) our fellow warriors commit their own acts of bravery. First up, I think it’s important to explore...
Reasons why people choose to stay closeted about their health problems:
- Unwanted attention (hello fellow introverts!)
- Feeling singled out or isolated
- Dealing with looks of concern
- The chance that someone might just not believe you
- Probing questions
- Unsolicited advice
- The feeling of letting people down
- Having to educate everyone on your illness
If you’re paying attention, you can pick up on a very important theme: social isolation, and its mirrored pair, community/inclusion. This is hugely important for all human beings, but especially those that general society deems different. For most of us, we feel like we have to suffer in silence because we don’t have a support system that really gets it. Yes, many of us have wonderful caretakers, partners, spouses, friends, and family members- but chances are that most of them are relatively healthy or at the very least, can’t truly relate to how we feel each and every day. It means something totally different to have a tribe or a central circle of passionate, authentic, beautifully flawed humans that nod in knowing when we talk about our brain fog or that deep ache that sets in after a day of pushing ourselves too hard.
This is one of the main reasons I started this little site of mine- in the hopes that one day this can be a place of truth and healing. A tribe of sorts where everyone feels accepted, feels validated, and feels inspired to live their authentic lives in whatever ways they want to. Not a place of judgment, of incessant advice, or of fear. I think one of the most undervalued aspects to healing is the ability to just hold space and have others hold space for you. It’s in this space that we can hear ourselves, be present in our own bodies, and tease out our soul’s deepest desires. And when we hold space together, we can witness the powerful, curative energy that arises when a group of individuals tug on a common thread.
But enough about that for now! Let’s get back to our list, and fill out the other side.
Some of the benefits of “coming out” might be:
- Not having to explain yourself repeatedly
- Finding people that respect your boundaries
- An energetic lightness- don’t underestimate this one!
- Bonding with someone who shares a similar story (Buddhists call this “the wisdom of shared suffering”)
- Not having to worry about maintaining lies or making excuses
- Engaging with the world openheartedly
- Not being expected to push yourself beyond your limits
- Having the chance to help others through your experiences
- Finding people who can help keep you accountable
- Truly and deeply healing (this can only happen when we’re willing to let it all out)
- The mindfulness that comes from giving up denial and seeing things for what they are
- Experiencing joy on a deeper level
As a general rule, those who live their truth and aren’t overly concerned with fitting in are often those who we are attracted to the most. We tend to seek those people who make no apologies, exude confidence, and are open to the people and experiences that life throws their way. And I think we all want to be those people, deep down, so what’s holding us back?
A quick disclaimer: this does not require you suddenly morphing into someone you’re not; in fact it’s just the opposite! It’s not healthy or beneficial for introverts to force themselves to be gregarious, or for anyone to feel pressured into self-disclosure when they’re not feeling comfortable or supported. I will always be someone who enjoys peace and quiet, someone who’s a little socially awkward, and someone who prefers small groups to large crowds. That’s just me, and that’s a-okay. It’s up to each of us to find the methods of living authentically that work for us and fit our personalities!
If you’ve ever had the privilege of witnessing someone’s coming out and their subsequent transformation, you probably have a taste of the real-life benefits of being true to oneself. Yes, often this transition brings some heartache and usually involves major shifting of priorities, revamping of social circles, and grieving the death of their “past persona”. But at the end of the day, all of us feel better when our thoughts and actions are aligned with our inner reality. And for the record, my first coming out as bisexual was much harder than this coming out as chronically ill! These things tend to have a domino effect, with each domino falling easier than the last, until your brave self can shine through unobstructed.
I know that it’s one thing to be vulnerable when you’re sitting in the doctor’s office and a whole other thing to be vulnerable when you’re applying for a job or out on a date with someone new. So I recommend you start slowly. Pick and choose the people and situations where you have the “least to lose” by being forthright about your struggles, and test the waters. If you have a personal blog, that’s a great way to break the ice. Or if you can find a local support group for your diagnosis, that can make for an easier transition as well.
Your invitation for today
Make a list of everyone who you haven’t told about your illness. This can be brief, e.g. my church group, my study buddies, my neighbors, or it can be down to a specific person’s name. Ponder your list for a moment, and then assign a value to each of them, based on how high the risk is of you coming out (1- almost no risk, probably will be a positive thing for everyone to 5- extremely high risk of social isolation).
Consider everyone you put into the “1” category, and think of ways you can “break the ice” with them. Some examples might be:
- Writing a blog
- Posting something on social media
- Wearing a shirt supporting a certain cause (like the M.S. 150, AIDS walk, etc…)
- Putting a new bumper sticker on your car/laptop/notebook
- Joining a certain Facebook group or online forum
- Asking for advice about something non-committal (using broad words like fatigue, pain, headaches…) and seeing where the conversation leads you
- Writing a letter to someone
- Selecting charities associated with your challenge (Solve ME/CFS, The Lupus Foundation, etc…) to be the beneficiary of your wedding, graduation, or other life event
Set a deadline for yourself to start living your truth with people. For example, it can be only a couple of weeks to talk to your yoga instructor, or maybe several months to divulge to a coworker. Take it easy on yourself- the idea isn’t to overwhelm you or anyone else with this “news”, but to slowly slip into a life that is authentic and spacious!
And don’t forget to prioritize. It’s usually far too exhausting and not worth the effort to talk about your illness with your barista or your distant cousin. Pick and choose the groups and individuals that you feel connected with, spend a lot of time with, or desire closeness with. You may be surprised by the number of people who will greet you with warmth and understanding, and perhaps even a deep friendship will come to fruition when you take the leap of courage!
If you are still feeling a bit wary, I highly recommend popping over to Brené Brown’s website and reading her blog and picking up a book or two. She’s a world-renowned researcher and author on connection, shame, fear, and vulnerability. Her books have been utterly life changing for me and I just can’t shower her with enough praise.
So, what areas in your life are you hiding parts of yourself? Can you imagine what it would be like to stop pretending and come out?
Wishing you all the best of luck and I would love to hear your coming out stories. And as always,
~ Hoping you feel as well as possible ~