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So, you’ve been diagnosed with MS. And now… you get to explain it to your family — the ones who think “you look fine” means “you must be fine,” and probably believe turmeric and yoga can cure brain damage. Here’s how to break it down for them without getting arrested for arson.
🔥 Step 1: Accept They Know Absolutely Nothing You say, “Multiple Sclerosis.” They say, “Isn’t that like arthritis? Or depression? Or being a bit tired?” Correct response: “No, darling. MS is when your immune system plays Pac-Man with your brain and spine. I’m basically on fire internally while appearing vaguely functional.”
🎯 Step 2: Use Analogies for the Visually Confused Science talk = blank stares. Try this: “Imagine all the wires in your house are fraying. Lights flicker, the toaster runs the shower, and the WiFi’s possessed. That’s my nervous system. I’m the house.” Still confused? Great. You’re halfway to understanding MS.
🛌 Step 3: Explain Fatigue, Because No One Understands It No, it’s not “a bit tired.” It’s “I stood up, and now I need three hours to recover and possibly an exorcism.” Try: “Imagine having the flu, running a marathon, and then trying to solve algebra underwater. With a hangover. That’s what ‘fatigue’ feels like — on a good day.”
👀 Step 4: The Legendary “But You Look Fine!” Ah yes. The battle cry of the wilfully oblivious. Response options include: “So does a bomb before it explodes.” “Thanks! You look emotionally fine, and yet, here we are.” “I also look like I have patience. Clearly, appearances are misleading.”
🚽 Step 5: Embrace the Awkward Topics Bladder issues. Bowel misadventures. Numb bits. Electric shocks for no reason. If they get squeamish, lean in: “Yes, sometimes my body forgets how to wee properly. Or feels like it’s on fire. Or I walk like I’ve been tranquilised at a wedding. That’s MS. It doesn’t care about your comfort zone.”
📚 Step 6: Give Them the “Google It” Clause You are not WebMD in human form. You're tired. You're done. Say: “I’ll send you one good article or video. If you still think I should just ‘go gluten-free and do Pilates,’ I will pelt you with hummus.”
🤡 Step 7: Laugh, Because the Alternative Is Screaming MS is ridiculous. It’s surreal. And it doesn’t come with a guidebook. So own it: “I forget words mid-sentence. I fall over nothing. Sometimes my feet go on holiday without telling the rest of me. No, I’m not drunk. I’m just… uniquely wired now.”
🧠 Final Words of Wisdom You don’t owe anyone a perfect explanation. If they get it, great. If not — that's not your job to fix. Educate where you can, sass where required, and when in doubt: nap, snack, and protect your peace like it's the last chocolate biscuit on Earth. “What It’s Like Having MS: A Choose-Your-Own-Symptom Adventure” — because chronic illness should at least come with a plot twist
looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky. sick@mylivinghell.co.uk
“The views in this post are based on my personal
experience. I do not intend harm, only honesty.”