Having an invisible illness, or multiple in my case, is a uniquely lonely experience. No matter how hard others try to understand, no matter how much time they spend with you, they’ll never truly get it unless they’ve lived it themselves. And that’s not their fault. I’m incredibly lucky to have some of the most supportive friends and family, even though they don’t fully understand what I go through every day. Honestly, I’m glad they don’t. I’m glad they don’t suffer the way I do. I wouldn’t wish any of this on my worst enemy. But that doesn’t make it any less lonely.
On top of feeling invisible, I often feel misunderstood. It’s so hard to explain what I experience in my body every single day. Feeling exhausted after doing nothing. Being in extreme pain but still having to show up and move forward. Carrying the guilt of not being able to participate in life the way I want to. Crying on vacation because my body hurts so badly, while seeming ungrateful even though I wouldn’t want to be anywhere else. Skipping breakfast with friends on weekend mornings because I need to sleep as long as possible to make up for another night of restlessness. Begging for accommodations at school while fearing judgment or denial because I look “fine” and put together on the outside. Going home early when all I want to do is stay. Spending hours driving across states for doctor’s appointments week after week. Living with the constant fear that my heart could give out at any second, or that my endometriosis is growing back with a vengeance.
Because others don’t understand my lived experience, it’s hard for them to grasp that this is simply my life. So sometimes, they forget. I almost never show it outwardly. They invite me to hike mountains or run 5Ks as if that’s something my body can do. I wish it was. But that’s not my reality right now.
The person I am today has been shaped by living with invisible illness for the last ten years. I don’t care what others think of me because I’m too focused on staying alive. I have a lot of confidence, because if I can survive ten years of feeling miserable in my own body, I can survive just about anything. Sometimes I can be blunt. Sometimes I forget others’ feelings. After being worn down by illness for so long, I’ve lost a lot of my sensitivity, and I’m still learning how to balance that.
My friends sometimes give me a hard time because I don’t love meeting new people or letting others get close to me, especially as I’ve gotten older. What they don’t see is how exhausting it is to explain my limitations over and over again. It’s awkward. It’s invasive. And yet, it’s often necessary just to justify why I do the things I do. My energy is extremely limited, and I want to spend what little I have loving on my inner circle, the people who have been through it with me. The ones who have tried, in their own ways, to understand.
Even if my loved ones don’t fully understand what I’m going through, they still find ways to show me they care, and I appreciate it more than they know. Seeking out the only chair in the bar and giving it to me. Checking in when I go quiet. Letting me cry and vent my frustrations (thanks, Mom). Suggesting something low-key instead of a night at the club. Making sure I’ve made it home safely. Validating my feelings around chronic illness. Sending flowers or my favorite food after surgery. Showing a genuine, consistent interest in my well-being. I am so deeply thankful.
All of this is why I created this community ten years ago and why I continue to lean on it for support. I know others living with invisible illness feel this same mix of loneliness, gratitude, exhaustion, and resilience. And while I hate that any of us have to experience this life, there is comfort in knowing I’m not alone. The worst club with the best members, as we like to say. In the end, this space exists to remind us that even when our pain goes unseen, our stories still matter, and we don’t have to carry them by ourselves.
