I am a strong, kick-ass, independent boss-babe woman. Also, could you please bring me my phone and my water, adjust the pillow under my feet, plug in the heating blanket, and cover my right foot, but not the left, throw out this handful of used kleenex, turn up the heat, and reassure me it’s your greatest pleasure to do so? If you haven’t finished the dishes or the laundry, no rush. I can wait. Probably.
As someone with MS, I spend a lot of my day mentally triaging my wants versus needs, divided by energy, before half asking/half apologizing for the small (and even big) favours that will help get me through my day. “Sorry to bother you, but…”, “Since you’re up, could I trouble you to…”, “Babe, would you mind…” are things I say all day, every day. And, more often than not, the words taste like bile in my mouth. Thanks to lockdown, lately almost all my requests for assistance go straight to The Banker. As much as I sound like a pampered princess with a man-servant in my employ, the truth is that constantly asking for help with basic things can be demoralizing. I fight feelings of humiliation every single time I get trapped in my sweater or need help getting up off the floor. MS means I’m going to keep needing help, so I need to figure this shit out, because feeling demoralized is not my jam.
Life with MS is easier when you have help. Obviously. Hallelujah, helpers. There are a million ways someone with MS might need a helping hand. Help can include everything from grabbing coffee and listening to us rant, to being understanding when fatigue forces us to cancel plans. Help can even include more intimate tasks like helping with dressing or showering and everything in between. I know how fortunate I am to have a husband who does every ice-cold, early-morning dog walk, and a bestie who has more than once offered to shave my legs. I don’t take these gifts for granted.
But at what point does gratitude cross the line into feeling indebted or like a charity case? Too much gratitude can feel more like lowkey begging for reassurance that your life isn’t more trouble than it’s worth. Barf.
I freely acknowledge my dependence on Netflix and Amazon. I’m not ashamed to admit I’m still suckling at Miss Vickie’s salty teet. But my dependence on another person to pick up my Amazon packages and to get the Miss Vickie’s off the high shelf can leave me feeling bummed about the things I feel I should be able to do for myself. MS can erode a person’s sense of independence and needing help can lead to feeling like a B in the worst possible way: Burden.
We live in a culture that values independence and productivity above all else. Even within the medical community we are routinely encouraged to maintain or improve our independence. I don’t object to this goal in theory; in fact, I work hard to achieve it. The problem is that when independence is the only option on the table, we don’t learn to appreciate the value of receiving help. We reinforce the silent, but excruciating, belief that needing assistance or being dependent in any way is a
Very. Bad. Thing.
Which serves none of us, because in the broadest sense, true independence is impossible (did you make your own car?), and unhealthy (even Tom Hanks needed Wilson). In the world of MS, when more value is placed on pushing ourselves past our limits, the pressure to be as independent as possible turns toxic when our efforts to be good disabled patients leave us too proud to ask for help, reluctant to take breaks, ashamed to use mobility aids, and feeling like failures.
If your kids have ever made you shitty coffee and undercooked pancakes on Mother’s Day, you already know that graciously receiving even garbage help is a gift to the giver. You don’t have to accept every rando’s unnecessary good deed for the day (I’m looking at you, aggressively helpful elevator button-pusher), but when we stubbornly refuse help that’s needed and freely offered, we risk rejecting love.
Asking for help creates trust and appreciation. Letting someone do something nice gifts them the opportunity to feel good. If you got a boost from getting me the chips, you’re welcome.
Asking for help when you have MS lets you use your energy for things that contribute to your relationship in a more meaningful way than folding the laundry might.
Relationships are give and take. If you have MS, you might feel like you’re doing all the taking. It’s tempting to wonder what we bring to the table when things feel unbalanced, but maybe that’s because we haven’t put enough value on the right things. The housework The Banker does is more quantifiable than the charm and wit I bring to this tit for tat (tho, to be fair, I also bring the tits). But real love shouldn’t keep score. Maybe it’s not fair that The Banker does all the toilet-cleaning. It’s also not fair that I have all the brain damage. Life isn’t fair. You are more than what you can “do” for someone.
You didn’t ask for MS. MS isn’t your fault. When we repeatedly apologize for having our basic human needs met we reinforce to ourselves (and others) that we aren’t worthy. Offering endless thanks can have the counterintuitive effect of suggesting the helper’s intentions aren’t sincere or that help isn’t given freely. What’s more, perpetual thanks and apologies can reinforce misguided shame and the sting of feeling like a charity-case, which is a slur we sometimes give ourselves.
Sometimes I ask for help and the answer is less than enthusiastic. Nothing outright hostile, more like silent resignation. I’ve struggled with the need to feel reassured that I’m not putting anyone out, that I’m not that effing B word, burden. But I recently had a lightbulb moment when I realized there’s a difference between being a burden and being annoying. I accept that sometimes it is a pain to help me with stuff. Sometimes it’s irritating af to sit down and get comfortable only to be asked to get up and bring the
goddamn chips life-saving medication. Nobody has to pretend they’re excited to clean up the broken vase full of water and dead tulips I’ve just dropped. Because, guess what? Whoever is doing me a solid is almost certainly irritating in their own right. Everyone does annoying shit all the time. We can be annoyed with each other and still have healthy relationships.
Assistance doesn’t mean burden. It means coexistence.
I understand that not everyone with MS has a helpful, supportive team 100% of the time. If you care for someone with MS or any chronic illness, it’s important that you never withhold care when you’re angry or fighting. To do so risks causing serious psychological damage, and you don’t wanna do that.
The Banker is helpful to a fault. He puts everyone’s needs ahead of his own. I know we’re all tired of hearing the whole oxygen mask analogy, so lemme tell you a much grosser story about the pitfalls of always prioritizing the needs of others.
The Banker won’t mind me sharing about the time he was prepping for a routine colonoscopy (because, as I just mentioned, my needs first). It was a Thursday night and I had choir practice. Choir practice, okay? Not exactly life or death. After several back-and-forth “are you sure you’re up to this?” texts, The Banker insisted on picking me up, even though I could have easily taken a cab. When I got in the car, he did not look good. He didn’t talk the whole ride home. He couldn’t. When we pulled into the underground he sprung from the car and immediately projectile vomited Peg-lite like he was auditioning for a remake of The Exorcist.
The Banker has never denied me help, but he’s not good at helping himself, and he especially sucks at asking for help. There’s nothing virtuous about this kind of self-sacrifice. Even Jesus accepted help from time to time.
The people in your life might be reluctant to ask you for help because they rightly recognize how much you’re dealing with, living with MS. But, helpers, please don’t deny us the opportunity to support you. Just because we have MS doesn’t mean we have nothing to give.
Brené Brown said, “Until we can receive with an open heart, we are never really giving with an open heart.”
Are you gonna argue with Brené Brown and Jesus? Yeah. I didn’t think so.
Are there things you routinely need help with? Instead of asking for a million things a day, I find it useful to periodically communicate the daily things that are especially hard for me, but might not be obvious (making the bed, prepping a hot water bottle, moving a chair in and out of the kitchen). If you pre-negotiate your needs, you might save yourself and your loved one the frustration that comes with being asked to do something repeatedly or at an inconvenient time.
At one point, we needed each other to survive in a very real, help me avoid being murdered by this tiger kinda way. Now we’ve been conditioned to believe that needing help makes us less-than.
Two thousand words later, I still don’t have this whole neediness thing figured out. I still feel like a disabled (but like, self-aware), Mariah Carey-level diva when my socks are being folded and I ask one more time for a glass of water and a room temperature adjustment. But when I think of the big things, when I think of The Banker holding me tightly to stop me from shaking from fever, or sitting with me in a foreign country, folded over a pillow while a doctor takes fluid from my spine, or setting up Optimus Prime in Paris so we can roam the city together, I don’t feel like a burden. I feel the opposite of diminished. I feel stronger; like we’re a team. When I think of these acts of love, I remember that I’m worth helping.
And so are you.
If you’re not convinced and still feel like MS makes you a burden, check out this TedTalk that helped me: “Being asked for help is a privilege.”