Your Friends Need To See Your Invisible Illness
Show Them & Tell Them
For a long time after I no longer needed the cane to walk, I still carried it around. You don’t realize how many weighted doors there are in the world until you’re too weak to open them. The door to the Physical Therapy Clinic was the worst. I had a routine where I’d pull the handle with one hand and push the cane against the floor with the other for leverage. Then I’d prop the door open with my right foot while I lumbered myself into the waiting room. Seems like poor design for a Physical Therapy entryway, but they said I was the only one who ever complained.
The cane was also an effective social shortcut. It was a universally recognized symbol that let people know to give me a little extra leeway. Don’t necessarily expect me to be able to hurry through that crosswalk. I might not be able to hold that 12 pound bag you’re absentmindedly hoisting upon me. Take care not to bump against me in a crowd, if you can. You never realize how much we expect of other people’s bodies until you walk through the world looking more able-bodied than you are.
These days, my medical problems are still extensive, but invisible. I am deeply grateful that I can walk and shimmy and dance. I carry my own groceries and open my own doors. There will be a stage in my future when I, once again, cannot, so I am living these days like borrowed time, filling my life with as much art, dance, laughter, connection, community, and kindness as I can find. These are very good days.
But I’ve lost my cane. I no longer have a symbol that instantly reminds people that I might not be able to keep up. Certainly, I tell the people who are close to me what I’m going through, but I struggle to find the words to really get them to understand. Other people’s chronic medical problems are easy to forget and hard to grasp. I’ve learned you have to show, not just tell, people how you are doing.
There’s a balance to be struck here. I want autonomy from overly aggressive caretaker types who try to take over for me when I don’t need it. I want compassion from people who have never been through anything like this themselves. I want people to adjust their social expectations of me in forgiving ways, but I also want to continue to be included. I have to allocate the energy to advocate for all of this while fighting for my health, working full time, and living my life. It sure would be nice to find some social short cuts for the wonderful people in my life who very much want to know how and when to be supportive.
Lately, I’ve been having breathing problems. Really bad ones. Breathing treatments aren’t helping. It’s been getting worse. My lungs ache. I had to re-home my pets, which was a heartbreaking process. Cigarette smoke has always been a problem. Lately, my asthma has been triggered more readily by pot smoke, pets, perfume, and cologne. These are things people have deeply rooted and complex emotional attachments to.
I feel like “I can’t breathe” should be a universal safety word that parachutes you out of social interactions without hard feelings, but that downplays how deeply personal this stuff is for everyone involved.
For example, a lot of people who enjoy weed spent much of their life fighting for its legalization, arguing that it is safe, and fearing punishment for using it. Some people rely on it for medical reasons, including anxiety. It might be the very reason someone is able to be in that social situation at that moment. Asking them to do without might be a more loaded request than you think.
Likewise, the scents we wear are highly emotional. When you are drawn to a fragrance, it sets off something wonderful inside you, something you want to be associated with, something you want to trigger in the people around you. Odors can spark memories of home, of comfort, of passion. They can calm or arouse us. Smell is also strongly connected to disgust. Smells helped our ancestors avoid rotten food and choose a mate, functions they continue to perform today in ways we only barely understand. So when we tell someone we have a problem with their smell, it can feel like an insult. Subconsciously, it is almost if we have said they disgust us or they are not worth mating with, even when, consciously, they know the reason is medical.
Beyond the psychological resistance, there is the force of habit. When someone doesn’t have a reaction to an irritant, they can easily forget that it is impacting you. So I’m on the look out for a metaphorical “cane:” Something to signal when I’m having trouble. Something that doesn’t require a ton confrontation. A reminder for the people who know my situation and want to accommodate me, but understandably, forget. Something that indicates the right amount of concern without taking over the social space.
Verbal communication comes first. There is no substitute for tactful honesty with those close to you. If you want to continue to have good times with the people in your life, you’re going to have to find the words that communicate what you need them to know. We must practice being intentional, compassionate, and precise with our words.
A Note on Precision
Use the medical term with the most appropriate level of severity for the situation. Some people say “I can’t breath in here” hyperbolically to mean “I dislike this smoke,” not “I’m having a medical emergency.” I’m learning to say “I’m fighting off an asthma attack,” to get people to think of my problems in medical terms.
This means, I have to be careful to only say “this is triggering my asthma” when I want them to understand this is an emergency, and say things like “this place is too smokey for me” when I mean “I shouldn’t stay here long.” Maybe follow it up with a request, like “can we open a window?”
My partner points out that I tend to use my inhaler with my back turned to people, walking away from the crowd, often dipping into another room. Even my partner, who is very attentive, was surprised to learn how often I use the inhaler at parties. It’s not a conscious deception. It’s a reflexive maneuver to avoid bringing down the mood, burdening other people with my problems, or worse, having to deal with a crowd of overly helpful people trying to aggressively caretake for me. But, unhidden, the inhaler can serve the function of the cane, a visual reminder to let my friends know where I’m at, an acceptable social flag that lets them see it’s not personal and it’s important. There is room in the social contract for someone with a cane or an inhaler: a physical manifestation to cure the forgetfulness and an assurance to quell the unconscious reflexive insecurities we all carry.
Thank you to everyone in my life who has been kind to me when I have had to talk to you about your store bought fragrance or your smoking around me. Please forgive me if sometimes I don’t have the energy to enter that fraught space, and I just leave the situation.
I’m curious what other signals people have found to advocate for their medical needs. I’d love to hear your experiences and tips, if you feel like leaving them below. What are the tools and symbols you use to show the world what you need them to see? What is your “cane?”