I was apprehensive for my first night out with my friends since my condition hit four years ago. At the time, I was not yet diagnosed, but I know that—seemingly out of nowhere—my world could become tremendously hazy.
Because of my condition, I would lose my ability to stand straight. I would experience dense brain fog that made it impossible to see clearly. When a doctor attempted to diagnose me, he asked me to draw a clock showing the time 3:20. I could not remember how.
On that first night out, my friends came over and marveled at how good I looked and how I didn’t appear sick. Although I’m sure they meant it kindly, I wished, at that moment, for a physical manifestation of the emotional turmoil I was experiencing. How else would they see that the last month was the most traumatic of my life? By complimenting me, it felt like they were suggesting that what I was going through was all in my head.
We went up to my roof and made some gin and tonics. When I said I wasn’t drinking until I figured out what was wrong with me, my friend handed me a drink. It’s the freakin’ weekend, after all! I put the glass to the side. I didn’t want to anger an ailment was just beginning to understand.
I was fortunate that evening. Despite having a few moments of unbalance, I was able to hang out, enjoy my friends’ company, and dance. What I didn’t know was that the road ahead would hold many more social moments where I felt isolated and misunderstood. I would eventually learn how to communicate my condition to my friends and create a new normal in my relationships. This is a guide to hopefully make that process easier for others.
This guide is for well-meaning friends, families, and partners of folks with invisible conditions. It’s for folks who may not full understand what the person they care about is going through, as invisible conditions cause a vast array of symptoms requiring tact in understanding. Let’s dive in.
Bodies Be Cray.
Bodies are complex, mind-boggling, frustrating, adaptive, and utterly beautiful. When your body is attempting to solve an internal problem, it tries everything, which can sometimes result in some rather odd symptoms. At times, akin to being on mushrooms, the colors I saw blended together. I have had double vision for days at a time. I have felt so disconnected from my body that I saw a miniature version of myself trying to make a good impression during a job interview, poor little thing. As a result of the inner chaos, we may sometimes appear zoned out or not fully present. Be forgiving in these moments.
Make No Assumptions.
Don’t anticipate the activities that people with an invisible condition can engage in. Trying to understand is great, but remember that we are experts in our condition. Ask us how you can help create an environment that feels safe. For instance, asking a simple, “What are your triggers?,” is nice. Or, “What activity could we do that would be fun for you and not trigger your symptoms?”
We may engage in seemingly counterintuitive behaviors due to the complexity of our inner world. I was eventually diagnosed with a balance disorder, but I can still go roller skating and even longboard. This helps challenge my brain to heal (called VRT). However, on the flip side, I can’t comfortably go to the grocery store or any brightly lit space.
You don’t always have to compromise and engage in activities that we can also participate in. Upon occasion, you may want to get drunk and go on a rollercoaster, which I can’t do. And that’s okay! When you are hanging with us, ask questions to gauge our comfort level and go from there.
Let Us Take The Lead.
The best way to enjoy our company is to let us take the lead in planning hangouts. As you can already see, our inner world may be complicated. When you live with a condition for a while, you learn your triggers. I realized that sitting on a chair that is slanted upwards makes me dizzy, but I am perfectly fine when it is tilted downwards. So when I run for that particular seat at the dinner table, I’m not an asshole. I am simply trying to remain balanced.
Planning with us may include some flexibility. For example, if we plan to go on a walk and I feel well, we can check out that honky-tonk bar or play some pool. However, if my condition is acting up, I may prefer to hang out at the house and play some games or chat. Because these conditions are so hard to predict, a level of flexibility has to be built into all of our plans and we may not be able to commit to something too far ahead of time.
Accept Our Flakiness.
Invisible conditions may be challenging to predict. If we miss your birthday party or back out of plans at the last minute, please know that it has nothing to do with you. Of course, we would love nothing more than to be there doing jager shots and flirting with the cute Australian bartender. Sometimes it just isn’t in the cards.
Ash, an advocate in my support group, shared that she was invited to a birthday dinner with family and had to cancel because she was unstable that day and couldn’t get out of bed. The next week, she was out to lunch with a friend and not as unsteady, when her aunt came walking into the restaurant. “I actually felt embarrassed because people don’t really understand this illness,” she told me. The unpredictability of invisible conditions can make it seem like we are ditching you on purpose. Trust us—that is not true.
This is also important when it comes to our social media presence. The five minutes we went on a walk and took a cute pic? That may have been the only time we were able to get out of bed that day. Take our word for it when we say we aren’t ditching you, despite being unpredictable in our planning.
Create a space that feels safe to communicate about what’s going on in our inner world. It is healthy for us to push our boundaries and even sit with symptoms sometimes. To do this comfortably, we have to feel like we can share our feelings about our symptoms. If you are going out with a crew, you can create a signal for when things get bad. Then if we have to leave, you can help us sneak out without drawing attention.
Patricia, another support group advocate who has a similarly misunderstood condition, shared, “I didn’t like it when I would say aloud to myself or just say out to the universe, ‘I’m so dizzy!’” and the response from my friends would be, ‘Still?’Yes still! I felt invalidated and like I wasn’t being heard. I think they could have said to me, ‘I’m sure that’s so hard to deal with,’ or ‘I’m here for you,’ or even nothing at all. I wish they could have stopped for a second to think about what it was like for me to have my whole world turned upside down and not openly express how this was frustrating for them.”
When we look normal, it’s tough to remember what we are going through. It’s also hard to understand that our symptoms shift so fast that we can go from feeling perfectly fine to struggling to stand up straight. Please take some time to think about what life could be like for us, and be thankful that you can’t fully understand.
Show Us That You Care
Showing that you still love us despite the changes in our relationship feels incredible. “My boyfriend has been my biggest supporter, and I remember one time someone said something implying my illness was fake. My boyfriend was the first one to tell them to educate themselves because it IS real,” Ashe shared. It feels great when others take on the burden of education, so it isn’t all on us!
Em Englert, author of Creating Bliss In Your Life With A Vestibular Condition and Beyond,
suggested that through education, friends can at least envision what symptoms feel like. Englert does an excellent job putting words to symptoms that I have struggled to articulate. Ask questions to learn about our diagnoses and then do some research on your own to learn about what we might be experiencing. Once you're educated, don’t push us to go back to the doctor or get any medical treatment. Much of the time, we understand our condition better than the doctor we are seeing does. I know you want to help, but telling us what to do is not the way!
As with anything, it is perfectly normal to make mistakes as you learn to be more supportive. The nature of your friendships may change, and you may have to navigate new activities and ways to connect. But we are still us! Since my condition hit, I have lost some friends, but I have found a deeper and more meaningful connection with those that remain. Being accommodating, flexible, and understanding holds tremendous value. There is something truly powerful about having genuine support through hard times. Thank you for being that person for us.