The Complicated Relationships I Navigate in Life With Chronic Illness

Living with chronic illness requires me to accept that my life will have challenges that I didn’t plan to experience. One of those challenges is learning to navigate a series of fairly complicated relationships.

As a young adult, I must figure out how to balance independence and the ability to live my own life, while also getting the help and support I need from family and friends to manage even what non-ill people would think of as simple tasks. As I meet new people and make new friends, I have to decide just how much I will “let them in.” As someone who lives with an invisible illness, it sometimes feels as though I am carrying around this big secret, and I have to figure out when, where, and at what time it’s appropriate to give the people I care about the relevant information. But it’s not a secret, nor should it be. And sometimes it can’t be. Sometimes things go wrong. A few weeks ago, my medication to manage my postural orthostatic tachycardia syndrome got lost in the mail, and I tried to carry on the best I could. But then I just about dropped to the ground in the middle of a conversation in the lobby at my school.

I also find myself feeling conflicted about providers. Is their advice the best thing for me? Do they fully understand what I want to be able to do in my life? If they don’t, maybe that’s my fault for not advocating for myself? But that’s difficult — I’m not a doctor, after all. And that leads me to what I think is the most complicated relationship of all in chronic illness: the one between myself and my diagnoses.

I generally think I have a good relationship with my illnesses. I accept that there are some things I just can’t change, but that I should push for solutions when there is really something I want to achieve. I also know I really need to work to take care of myself. Managing a chronic illness could be a full-time job in itself. But every day, even when I do absolutely everything right, “by the book,” my illness is still there. I often describe it as a constant humming in the back of my head. I can always hear it. If I focus on something else, I can tune it out. But there are times in the day when I must give it my full attention, or it will start wailing. Even with the quiet hum and setting aside time for its specific care, it never quite quiets down. That is hard.

Then there are days in which all I want to be able to do is what “everyone else does.” When I want to toss the book out the window and just be. But I know if I do, the next day will be worse.

I’m not sure which is harder. But I do know that on each of those days — when everything makes me feel like I want to scream, but all I can muster is silence — I feel like myself. I don’t feel like I am wearing a mask to pretend I am as “normal” as someone without an illness. Living with illness is my normal. It is normal. Being around so many people who do not live with illness as part of their every day is extremely isolating. It feels weird to describe my experiences. I feel awkward talking about my food allergies and heart medications and vulnerability to dislocation. But it is me. I feel more awkward when no one knows.

Every day my illnesses challenge my ability to think creatively, organize, and problem-solve. Most of all, chronic illness challenges my willingness to forgive myself — for feeling awkward, for pretending I’m fine, for not pretending I’m fine, for pushing myself too far, for not pushing myself far enough, and for having expectations, whatever they may be.

I often euphemistically say about my illnesses, “yes, it’s an interesting process,” just to end an uncomfortable conversation. But the reality is — it is. Living with chronic illness is a process. With no stagnant periods of wellness or unwellness, I go through cycles of willingness to share, unwillingness to share, and self-consciousness about sharing my experiences. It’s just complicated.