MS diagnosis changes conversations, shortens patience but most importantly, distorts the perspective of our self-worth. — #MSWarrior blog comment
Terrified is more like it. Terrified like an 80s kid watching IT. We’re terrified you (the non sick) won’t help. Terrified you won’t listen. Terrified you’ll use our disease to attack us. Terrified you’ll pretend you didn’t hurt us. I could go on and on. As a matter fact, I did. I read somewhere that good writing stops at three examples. Sorry, I’m sloooowly becoming a creature of positive energy but gathering the stories and fears of #MSWarriors for this blog stirs my darkness. We’re terrified; shhhiiiiiiiiiii, I know damn well I am. (Anybody seen 25th Hour? No? Spike Lee joint of 2002!) Before the official diagnosis, I doubt any #MSWarrior could fathom being in pain literally every waking second. We walk, work, raise kids, feed families while in constant pain. Even writing it reads kinda dramatic but dead honest. Of course; MS is like snowflakes, different cocktail of symptoms for every Warrior but that pain is a common denominator. I’ve talked with Warriors whose Neurologists have argued that their pain is nonexistent because the brain is just sending wrong signals! #MSsucks. Our terror is real. For every, “BUT you know so-in-so wouldn’t do that”, there are 1000 posts, comments, stories, shares of our terrors becoming reality. You won’t help. You won’t listen. You’ll use our disease to attack us. You’ll pretend you didn’t hurt us. This is #LifeWithMS and it complicates marriages by compromising communication. We’re terrified to talk.
What’s the solution? Ask. Even when we lie, ask again. Why lie? We’re terrified to talk. When you think your partner is hurting, they are. When you think their walk is getting worse, it is. Ever noticed they aren’t eating? How about not talking as much? Laughing as hard? Staring into space? If not, congratulations! You’re terrifying your patner with the lack of companionship because I guarantee she/he notices and tracks all that with you. Remember, you aren’t the one with frigging Multiple Sclerosis. I know, I know. Its not fair. You didn’t sign up for diseased; sick is cool beans, but diseased? Which is why we’re terrified to talk. Somebody gotta step up, right? I get it. You can’t pick up our slack, constantly check on us and… Wait, who are you checking on if you aren’t noticing things? I’ve got stories of husbands filing for divorce while wives are at doctor visits, alone, again. Yikes!!! Wives who’ve gone months without inquiring, “How is the MS? Symptoms? Pain?” Geesh. Boyfriends who actually stop group conversations over their partner’s condition. Yuck. Girlfriends who do the whole mimicking their partner’s movements to get jokes. I could go on but no. This is #MarriedButMS. An upside down world of partnership without communication. An awful, forced arrangement devoid of truth because we’re terrified to talk and you don’t ask.
#MSWarriors, this is not about reading between lines or listening to what is said directly to you. Its just….. we have weaknesses and triggers dealing with an invisible illness that require a certain level of mental focus and emotional resiliency. Be careful with that BIG heart of yours.