Running a marathon in your head, but waking up feeling like you’ve been hit by a truck- the best way to describe what life with a chronic illness or two looks like. Chronic pain and illness operates like a ninja, silently tearing away at your insides, while you “look fine” on the outside. It’s difficult to explain why plans suddenly get cancelled, why it takes hours to build up the strength just to shower, dress and put on makeup, why activities must be budgeted for like a bank balance. It’s hard to explain why seeing public places with no cushions on the seats fills you with absolute dread, because you know you’ll be in agony if you sit for more than thirty minutes on one of those things, and then have to face the embarrassment of your legs seizing up from sciatic pain, and how you could go there walking normally, but then leave the place hobbling, bent over. It’s difficult to explain why standing and listening to someone talk for more than a few minutes can be so exhausting you need to make your excuses and leave, to find a comfortable place to collapse into a heap on, so that you can recover. It’s impossible to get others to understand the pain, anxiety and sheer determination a person with a chronic illness must endure just to give the impression of functioning normally. For every smile, there are a thousand tears shed in silence. We must rest our arms every time we brush our teeth, our legs and feet every time we walk just a few steps, our weary heads every time we speak.

Chronic illness never dissipates, and hoping that it “gets better” doesn’t make us feel better, even if we graciously say “thank you” for your warm wishes and happy thoughts on our behalf. “Staying positive” doesn’t end our pain, or magically deliver a cure, because there isn’t one. Practicing mindfulness just keeps us from spiraling deeper into a natural depression. We can’t help but grieve for the functional bodies we once had, and for all of the things we were once able to do. Telling us to “exercise more” is akin to telling a person in a wheelchair to “get up and walk.” Although some of us can exercise, it’s never without steep consequences afterwards, either on our ever-waning energy levels, or on the pain, which always rebounds on us, even if our mobility is temporarily increased by the physical activity. Losing weight, while helpful, isn’t a magic bullet either, so please stop nagging us about this, also. It just helps manage the pain, it doesn’t make it go away, and it won’t cure the underlying disease. Take it from someone who’s battled with addiction and disordered eating patterns, and yo-yo dieting before I got sick, dieting is more destructive than anything else when it comes to weight management. Weight loss surgery can also trigger flareups too, because of the stress that it puts on the body.

I’m not sharing this to elicit sympathy, but to help others gain a greater understanding of what life with a chronic disease is like for the person who’s living with it. So often, we are told that there’s an empathy gap in our society, and a great emphasis is put on spreading kindness around, yet with chronic disease, there’s still so much misunderstanding and just plain cruelty in how those with it are treated. I’m an accidental advocate now for those with chronic disease, because it’s a part of my experience. I just wish and hope that it won’t take others needing firsthand experience to also understand what we’re going through.  We are suffering in silence, because we know that you won’t understand that our struggle is real.