Emily Marston

You’d think the biggest barrier with chronic illness would be the diseases themselves. Nope! Turns out it’s the medical system and the people inside it. Don’t belive me? Here are actual quotes from self identified medical professionals on Reddit, talking about people like me, and it makes my blood boil 😡 “As a peds rheumatologist… I don’t love the hypermobility/AMPS/POTS referrals… I can usually talk them down from the ledge.” “POTS is the new chronic fatigue syndrome, which is the new chronic Lyme, which is the new fibromyalgia.” “It’s the new ‘cool diseases’… some want to wear the POTS/MCAS/EDS badges to draw attention to themselves.” “There’s a subset of patients who ‘collect’ diagnoses… a lot of these diagnoses (like POTS) are just somatiform disorders.” “If this were 1800s Victorian era we could simply prescribe them all vibrators.” “I’ve noticed [hEDS] has become a ‘popular’ (Instagrammable) illness.” “Now the term hEDS is essentially medically meaningless… seeing it on the record is a harbinger the patient will have multiple nonspecific symptoms.” “Honestly, I think it’s bullshit… hEDS is not a genetic disease.” “Said diagnoses invariably come from cash-pay only physicians in solo practice clinics, often in strip malls.” "These chronic illness communities are just that, community. Collecting these diagnoses is a competition for them." "The TikTok quartet MCAS, EDS, POTS , gastroparesis." These are medical professionals. They turn our suffering into punchlines. They think these are all trends. We spend years fighting for answers, to be believed, to get even the bare minimum of care. This isn’t just ignorance, it’s hate. If you’re a doctor reading this. You don’t have to understand these conditions to treat people with respect. No one wants to be sick. But if your first instinct is to mock, dismiss, or run to Reddit to post, you’re not just part of the problem. You are the problem.

Chronic illness can quietly, but deeply, put a strain on relationships. Many healthy people don’t realize just how much energy even basic tasks can demand from us. What feels like a small task or routine to you, such as doing the dishes, taking a short trip to the store, or going to a birthday party, can drain us for the rest of the day or longer. Yet we’re constantly pushing through symptoms like fatigue, pain, brain fog, dizziness… often all at once. And yet, we still show up as much as we can. We help around the house. We attend the graduation, the dinner, the family event. We smile, make conversation, try to be present. Because we want to. Because we care. But some days… we just don’t have it in us. We might not be able to get out of bed, let alone clean or run errands. Maybe we cancel plans last minute. Maybe we seem distant. Maybe we’re just too exhausted to talk. To our loved ones, it might seem like we aren’t giving enough, they may think all we did today was laundry, but to us, that was a marathon. To us, it feels like we’re giving everything we have and still disappointing others. It can also become frustrating because we just want others to understand but we know how hard that can be. That disconnect can be painful. If you love someone with a chronic illness, please know, we are trying. More than you can see.