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I Live With an Invisible Medical Condition. Here’s How My Partner Shows Up for Me Every Day

After going on a slew of dates at bars with fellows who talked at length about their less-than-interesting tastes in beer and uninspiring investments in crypto, I was starting to feel hopeless about dating in New York. Perhaps that’s why I was so intrigued when a rebellious-looking Ukrainian guy I met at my local dive bar invited me to climb a mountain for our first one-on-one hang. It was the dead of winter, and he said to block off the whole day and bring boots that work for ice climbing (whatever that is). So naturally, as I prepared for our date, I wondered what this boy intended to do with me once we got to the top of the ice mountain. But I also had a more potent concern, one I was slowly becoming familiar with: wondering if my invisible condition would rear its ugly head and mess up our date.

I have Left Peripheral Vestibulopathy, an inner ear disorder that unexpectedly hit when I was 26 years old and had just moved to NYC. I look like an average person, but when my symptoms hit, I lose my ability to stand straight, visually focus, or think coherently. My symptoms emerge randomly, and I’m the only one who can detect the vast inner shift. It took some time for me to get comfortable talking to others about my condition, and I met the Mountain Man soon after I decided to re-enter the dating scene.

Determined to keep my adventurous spirit alive, I took some deep breaths to ease my apprehension and went on the date. I’m so glad I did, because three years later, I’m still with the Mountain Man, and through lots of trial and error, we’ve come a long way in navigating how he can support me. Here’s what we’ve learned, and how you can show up for someone who’s in a similar situation.

First, don’t make assumptions

If I had told the Mountain Man about my condition before our first date, he might have assumed that climbing an ice mountain might not have been the right move. But, in reality, exercise alleviates my symptoms, whereas a more typical first date, like sitting in a crowded restaurant or bar, tends to aggravate them. Symptoms of invisible illnesses are often complex and can vary significantly from person to person. As a result, the best way to learn about your partner’s limits is simply to ask them instead of making assumptions.

Ask us what we need

When I first told the Mountain Man about my condition, he tried to help me by pressuring me to go back to the doctor, confident they could do more for me. Although his intentions were sweet, he wasn’t there for the years of endless doctor’s appointments, leading to false promises and disappointment. At the time, I was working on accepting the condition, and I didn’t want to deal with any more doctors. By pushing, he wasn’t helping me in the way I wanted or needed him to.

“No matter how well-intentioned we are, sometimes we miss the mark,” says Dr. Aurelie Lucette, a health psychologist specializing in chronic illness. “Asking our partner what they need makes it more likely that we will show up for them in a way that is truly helpful and supportive instead of trying to guess how to help them.”

Remember: We’re experts in our experiences, and although sharing ideas is great, deciding what’s best for us is never a good move. Instead, genuinely ask us how you can best be there for us.

Learn about our illness

Take proactive steps to learn about your partner’s condition. When Mountain Man and I became close, I added him to a Facebook group of people with similar conditions so he could read about their experiences to gain a better understanding of my inner world.

“Watch and share your observations with your partner,” says Blanca Vergara an empowerment coach who also has an invisible illness. “As you both go through this journey, understanding and compassion will grow.”

It may be easier for our partners to notice patterns in our behavior than for us to, since we’re in the thick of it. Mountain Man played a significant role in detecting what triggered my symptoms, which was crucial in improving my day-to-day functioning.

Check in with them

It’s essential to keep an open dialogue about your condition with your partner and create check-in plans. For example, some people may create a symptom scale to share how they feel on any given day. You may also want to create a hand signal for your partner to use if they feel ill at social events, so you can help them evacuate the scene.

Having strong listening skills is also essential. “When your loved one brings up something they’re going through, listen without minimizing, trying to distract them, or glossing over what they’re going through,” says Dr. Jacob Hascalovici, a pain specialist. “Try to avoid comments that may undercut your person’s experiences, such as ‘You don’t look so bad!’ even if you mean it in a positive way.”

When people focused on how I “didn’t look sick” even though internally, I was struggling, it made me feel even more isolated in my experience. Instead, work on asking the right questions and sincerely listening to understand your partner’s experience as clearly as possible.

Know that their moods aren’t always dependent on you

Imagine that your partner experiences a secondary weather system that you can only understand if you ask them directly. If they’re having a thunderous day, that will understandably impact their mood. Invisible conditions are alienating because your internal state (which nobody else can see) significantly affects how you feel and what you can do that day.

My condition absolutely dictates my mood. When I’m having a thunderous day, I put all of my effort into not going to a place of self-pity and loneliness. Folks with invisible illnesses often have to work hard to accept their symptoms, and as their partner, it’s important (albeit often difficult) to accept that occasional moodiness, knowing it has nothing to do with you. Instead of getting annoyed, see if you can do anything to lighten their load during the more challenging days. Patience is key.

Make it a point to take care of yourself too

You can’t support your partner without first taking care of yourself. Even if they’re having a hard day, you can’t and shouldn’t sacrifice your needs for your partner, because that sacrifice can breed resentment and dependency over time. Mountain Man and I make an effort to have independent lives. Even if I’m having a hard day, I don’t ask him to give up his plans or passions to be with me because he deserves to have a life of his own. Ideally, both partners should have friends, family, and, if they want, therapists with whom they can share their frustrations and find support with. Then, you can take on the role of a loving, sympathetic partner, but not be their sole resource as personal therapist or caretaker.

Understand their flakiness

People with invisible conditions can’t predict how we’re going to feel on any particular day. As a result, you must take us for our word when we share how we’re feeling, as there may be a huge difference from one day to the next or even moment to moment, regarding what we can and can’t do. For example, Mountain Man used to get annoyed because he thought I would always feel good enough to go out with my friends, but that I’d complain that my condition was acting up when he wanted to go out with me. It took him a while to understand that I can’t affect, predict, nor control my symptoms on any given day, and that they can change at a moment’s notice. (And no, it’s not just because I don’t want to hang out with his friend Larry, who drinks too much and doesn’t stop making ill-timed sex jokes.)

Advocate for them

People with invisible conditions are often not believed by others, and our needs often aren’t recognized or taken seriously by medical professionals. Having a partner come to appointments to validate our experience and advocate for us to receive the necessary care can be incredibly helpful and show a true investment in our betterment.

“Continue to learn about their diagnosis, treatments, and resources available in the community, stand up for them, and, at times, educate others about the diagnosis,” says Aurelie. Feeling like we’re not alone in our journey and that someone has our back is essential. When I hear my Mountain Man educating our friends or sending me new research about my condition, I truly feel warm and fuzzy inside. It’s vital for people with invisible conditions to have that support system.

Having community can uplift someone’s self-esteem, make them feel less lonely, and lead to more positive physical and mental outcomes, says Aurelie. Just the fact that you’re taking the time to read this story shows you care. And even though you can never fully understand your partner’s experience, researching their condition and having an honest conversation about how you can best support them will go a long way.

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