I live with an invisible disease. Here are the ways my partner shows up for me every day.
After a series of dates with partners who talked at length about their less-than-interesting taste in beer and uninteresting investments in cryptocurrencies, I began to despair of dating in New York. Maybe that's why I was so interested when I met a rebellious-looking Ukrainian guy at the local dive bar who invited me to go on my first one-on-one climb. It was harsh winter and he said he would block off a full day and bring boots suitable for ice climbing (whatever that is). So naturally, as I prepared for our date, I wondered what this boy planned to do to me once we reached the top of the iceberg. But I also had a stronger concern, one that was slowly becoming familiar to me: wondering if my invisible state would raise its ugly head and screw up our date.
I was left with peripheral vestibulopathy, an inner ear disease that flared up unexpectedly when I first moved to New York at age 26. I look like a normal person, but when I have symptoms, I lose the ability to stand up straight, focus visually or think coherently. My symptoms came on randomly and I was the only one who could notice the huge internal shift. It took me some time to adjust to talking to people about my condition, and shortly after I decided to re-enter the dating scene, I met Mountain Man.
To keep my adventurous spirit alive, I took a deep breath to ease my apprehension and continued dating. I'm glad I did, because three years later, I'm still with Mountain Man and through a lot of trial and error, we've made great strides in understanding how he can support me. Here's what we've learned and how we can help someone in a similar situation.
First, don't make assumptions
If I had told Mountain Man about my situation before my first date, he might have assumed that climbing an iceberg might not be the right move. But in reality, exercise relieves my symptoms, while more typical first dates, such as sitting in a crowded restaurant or bar, tend to exacerbate them. Symptoms of invisible illnesses are often complex and vary from person to person. Therefore, the best way to understand your partner's limits is to simply ask them rather than make assumptions.
Ask what we need
When I first told Mountain Man about my condition, he tried to help me by pressuring me to go back to the doctor, believing that there was more they could do for me. Despite his sweet intentions, years of endless doctor appointments that he was not available for led to false promises and disappointment. At the time, I was struggling to accept the offer and I didn't want to deal with any more doctors. By pushing, he didn't help me the way I wanted or needed him to.
"No matter how well-meaning we are, sometimes we miss the mark," says Aurelie Rousset, PhD, a health psychologist who specializes in chronic illness. "Asking our partners what they need makes it more likely that we will be there for them in a way that is truly helpful and supportive, rather than trying to guess how to help them."
Remember: we are experts in our experiences, and while it's great to share ideas, it's never a good move to decide what's best for us. Instead, ask us honestly how we can best serve our needs.
Understanding our disease
Take proactive steps to understand your partner's condition. When Mountain Man and I got closer, I added him to a Facebook group with a similar condition so he could read about their experiences to better understand my inner circle.
"Watch and share your observations with your partner," says Blanca Vergara, an empowerment coach who also suffers from invisible illness. "As you both go through this journey, understanding and compassion will grow."
Our partners may notice our behavior patterns more readily than we do because we are in the midst of them. mountain Man has been instrumental in detecting what triggers my symptoms, which has been critical to improving my daily functioning.
Check in with them
Maintaining an open dialogue with your partner about your condition and creating a check-in plan is critical. For example, some people may create a symptom scale to share how they are feeling on any given day. If your partner is uncomfortable at a social event, you may also want to create a hand signal for them to use so you can help them evacuate the scene.
Having strong listening skills is also essential. "When your loved one brings up what they're going through, listen rather than minimizing, trying to distract them, or covering up what they're going through," says pain specialist Jacob Haskalovich, M.D., Ph. "Try to avoid comments that might diminish what your person is going through, such as 'You don't look that bad!' Even if you mean it in a positive way."
When people focus on how I "don't look sick" even though I struggle internally, it makes me feel more isolated in my experience. Instead, make an effort to ask the right questions and listen honestly to get as clear an understanding of your partner's experience as possible.
Know that their emotions don't always depend on you
Imagine that your partner is experiencing a secondary weather system that you can only understand if you ask them directly. If they are having thunderstorm days, it is understandable that that would affect their emotions. Intangible conditions are alienating because your internal state (which no one else can see) significantly affects how you feel and what you can do that day.
My condition definitely determines my mood. When I have a thunderous day, I put all my effort into not going to a place of self-pity and isolation. People with invisible illnesses often have to struggle to accept their symptoms, and as their partner, it's important (though often difficult) to accept occasional moodiness and anger, knowing that it's not about you. Instead of getting angry, see if there is anything you can do to ease their burden on more challenging days. Patience is key.
Take care of yourself, too.
You can't support your partner if you don't take care of yourself first. Even if they get through a tough day, you can't and shouldn't sacrifice your need for your partner, because over time that sacrifice breeds resentment and dependency. Mountain Man and I strive to live independent lives. Even when I'm having a rough 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 a therapist with whom they can share their frustrations and seek support if they wish. You can then take on the role of a loving, compassionate partner, but not be their only resource as a personal therapist or caregiver.
Understand their vulnerability
People with invisible illnesses cannot predict how we will feel on any given day. Therefore, you must take our word for it when we share our feelings, because there can be huge differences from day to day and even from moment to moment in what we can and cannot do. For example, Mountain Man used to get angry because he thought I could always go out with my friends, but complained that my condition came up when he wanted to go out with me. It took him a while to understand that I couldn't influence, predict, or control my symptoms on any given day, and that they could change at any time. (And no, it wasn't just because I didn't want to go out with his friend Larry, who drank too much and kept making inappropriate sexual jokes.)
Advocate for them
People with invisible conditions are often not believed by others, and our needs are often not recognized or taken seriously by medical professionals. Having partners come to appointments to validate our experiences and advocate for us to receive the necessary care can be very helpful and show a real investment in our improvement.
Lucette says, "Continue to learn about their diagnosis, treatments and resources available in the community, stand up for them and sometimes educate others about the diagnosis." Feeling like we are not alone in our journey and having someone to support us is essential. I literally feel warm and fuzzy inside when I hear my mountain man educate our friends or send me new research about my condition. For people with invisible illnesses, having that support system is critical.
Lucette says having a community can boost someone's self-esteem, make them feel less alone and lead to more positive physical and mental outcomes. The fact that you took the time to read this story shows that you care. Even if you will never fully understand what your partner is going through, it will help to research their situation and have an honest conversation about how best to support them.