In a vast library of films, I have yet to see an honest depiction of chronic illness and relationships. There are moments that pop up in television series and informative singular tales in documentaries, but they all lack the truth and complexities of navigating intimacy while dealing with a daily disease.
I use a broad classification of relationships. This term includes acquaintances, friends, lovers, partners, spouses, and family. It fits anyone with whom I have shared a connection or meaningful moments in time. Over the years, it has become clear just how important my health is when dealing with all relationships.
Acquaintances (my stylist, barista, friends of friends, neighbors, social media, etc.) can actually require the highest energy expenditure. I’m a private person with invisible disabilities so they don’t usually know my medical situation. If I am encountering these people, it is likely not in my home. I have to gear up to see them. Most of the time, I am careful the day before an excursion. That way, I can smile and engage with polite conversation and actually enjoy the interaction. They don’t know that I’m incapable of standing for too long or that sitting in loud music with chemical fumes will trigger a migraine. If medical issues come up, acquaintances normally act surprised and I am forced to do the push it aside 2-minute description dance, “No, I’m fine. It’s no big deal.”
That energy changes when I am dealing with my friend relationships. I’ve explained to my friends what I am going through. Mind you, the conversation is broad strokes and I have a bad habit of underplaying my symptoms. Maintaining adult friendships without a chronic illness can be enough of a struggle. When you toss in constant pain and bizarre symptoms even the firmest friendships bend.
If, like me, you’ve gone from very active and healthy to frequently immobile and ill, people can confuse your new fatigue and inactivity as a lack of interest and avoidance. Maybe you built your friendship on a shared love of athletics or a specific vigorous activity. That relationship can devolve when you are no longer able to participate. Some friends are fearful or unsure of your conditions. They may not understand your disease or even have to capacity to handle a friendship that requires constant change. This doesn’t make them bad people or even bad friends. It just sheds light on the foundation of your relationship and shakes it to see what is left standing.
I place my dearest friends in the same relationship catalog as lovers, partners, and spouses. They hold a place deep in my heart. These are the people with whom you share your vulnerable self. They know details about your illnesses and step up to help when you call. These relationships, don’t take much energy but they do take time and selflessness. When pain strikes or you’re having a flare, they understand that you have to cancel plans or hibernate. The tricky part of this relationship is balance. If you are a taker, dealing with a chronic disease may push you to take too much. If you are a giver, you may cut off your arm when only a finger was needed. It’s easy to over compensate.
When it comes to sexual intimacy, your disease may have more control than you want it to. If your condition has changed your appearance, that absolutely affects your confidence. Once you’ve passed the hurdle of flirting and dating with a bent body, you have to decide how much to share about your illness with a new lover. Then comes symptom management before, during, and after sex. Physical affection is a primal human desire. No matter the disease or symptom, we still crave various levels of attachment to other people. Conversations around control can be crucial to having a good physical connection.
There can also be guilt associated with having a chronic illness. I know my physical boundaries and triggers but adding those guidelines to a relationship feels crappy. A body’s limit is a form of baggage that you can’t hide, no matter how hard you may try. It’s healthy and beneficial to ask for what you want but it’s also stressful to ask someone to be intimate with so many qualifiers. There is no perfect way to deal with this situation. We just have to remember that everyone brings their issues into a relationship. Whether they are physical, mental, or emotional, everyone is wonderfully weird.
I don’t personally believe that each person gets a happy ending or even that we all experience romantic love. However, a complicated life is desirable to the right person. More important than that, illness and pain do not negate your deservingness for intimacy and love. Luckily, those relationships can take many forms.