How To Quit Feeling Like MS Makes You A Burden
How to quit feeling like MS makes you a burden
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.
When MS makes you feel like a burden
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.
Dependence has an image problem.
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.
Why you need to stop the belief that MS makes you a burden
Accepting help is accepting love
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.
Accepting help improves relationships
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.
Everyone wins
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.
Cool, cool, I get it–it’s better to give than to receive. Is that why it sucks so bad to always be the receiver?
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.
How to get better at receiving help and stop feeling like a burden
Stop apologizing, and ditch the endless thanks
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.
Accept that sometimes it will be annoying to help you
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.
Let your helpers know they can, and must, ask for help from time to time
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.
Communicate during a neutral time
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.
We all need each other
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.”
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Fantastic read! Every single word is relatable, for me. I have been working on not feeling like a burden, for a couple months now. Reading this couldn’t have come at a better time. Thank you! Bonnie ?
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Sounds so familiar. Yes, we do at times think of ourselves as a burden. I can’t NOT admit to feeling this way, it happens almost daily. THAT is the unfortunate truth about life when your MS progresses to the point you may need help with things that you never needed help with before.
Thanks Ardra! You nailed it on the one. ??
This might be THE BEST thing I have ever read about MS on the internet, no scratch that – that best thing I have ever read about MS anywhere. Thank you. As someone who doesn’t easily ask for help this tugged at my heart.
I am going to ask my husband to read this. Like The Banker sounds, my husband is incredibly helpful. But I feel so guilty asking him for help All The Time. When I ask particularly meekly for help he will turn to me and say “When have I ever not helped you?” You explain how it feels from the person with MS’s perspective so well that I think he will come to better understand why I feel so uncomfortable asking for help sometimes. BTW, the bit about “cover my right foot but not my left” is hilarious!! He hasn’t gotten the message yet that if my feet are outside of the covers they are outside of the covers exactly how I want them to be. He will toss the cover over my feet thinking he’s helping me! He does it reflexively, and then he has to uncover them exactly how I want. He does think I’m a little crazy for changing the temperature in the car 1°…but there’s a difference between 72 and 71 if you have MS, am I right? ?
If you know, you know ????
You just might be the twin that I never knew I had. Everything, and I mean everything, that you wrote about applies to me. I laughed when I read your descriptions of “sorry to bother you, but…”, “Since you’re up, could I trouble you to…”, “Babe, would you mind…” as these are the very same things I say every day.
Your insight and wit are much appreciated as I navigate this ms journey which, at more times than I care to admit, can feel very lonely indeed.
Great article, and I LOVE the caaption under the berach photo :).
After years of being the typical “Dad” – doing the yardwork, fixing the plumbing, packing for trips, and on and on – one of my biggest struggles is the mental anguish of having to sit around while my wife and daughters take on these jobs. I am so apprevciative of them (especially the W!!!) but damn, I hate having to start a chore and need to quit after just a few minutes. The physical fatigue is brutal, but it is nothing compared to the mental torture of watching ohers do “your” work.
Rememberimg that WE got MS can help, so can planning and hiring others to do the work (see “fix the plumbing”). At the end of the day, I know I am fortunate to have a good support system and I try to push myself to do th ings that are not so easy – like leaving the house 🙂
I needed this. My Banker is a retired appraiser and former Marine so Gung Ho or Oo Rah is probably more appropriate. Add in his Korea Head injury,our ages and a pandemic and the stress with our support of each other is what makes our almost 33 years marriage (March 5), the nest thing I ever did.
Yes, you do bring the tits. That’s totally something. As Jeff above said, hiring the help can be a life-saver too. I would give up almost anything in my life before I gave up my weekly housekeeper. These computers in our houses are amazing too. Nest thermostats, Hue lights, Casa outlets, Ring doorbells, and my newest find, Pura home scents, are all controlled with my phone or Alexa and they make living with MS just a tiny bit easier.
Again thank you Ardra. Being a retired (early, thanks MS) nurse I have an especially hard time requesting and accepting help. After all, I was the caregiver at work and at home. It’s been cruel trying to make the transition that I’ve been working on now for 17 years. This article was so helpful for me. Thank you dear one.
Judith I too am a early -not by choice -retired RN . I have taken care of EVERYONE for 63 years of my life and loved it. Last 2 years I am struggling mightily and this article was a godsend to me, i feel like i need to commit huge parts of it to memory to draw on moment to moment.
You’ve done it again, love love love this post. Being able to relate feels like a relief, thank you for sharing this ?
This topic was one of the two main reasons I started seeing a therapist on a regular basis. That feeling of low self worth, or feeling “less than” compared to the people helping me in my life. I’m still working my way through this, but your words definitely help; and I will be reading it over again to make sure they really sink in.
Thank you A. Lots of learning here. Xo
Thank you for this article. It really hit the nail on the head for me. Especially the request to pass the chips!
Your article really resonated with me. I’ve had MS for 20 years and am JUST getting better at asking for help. I have been so afraid of becoming the B-word, but now realize that people appreciate my honesty more than my stoicism. It opens the door for empathy and connectedness.
I am lucky to have an amazing support network; they want to know what I need and I am rarely disappointed when I ask for help.
Thank you, from one Miss Vickies lover to another 😉
Please can you tell me the name of the Walker you have. It is so modern and would make me feel less disabled
I have two and they are both awesome! You can find deets and discounts here:
https://trippingonair.com/2020/03/ready-for-a-cool-rollator-is-rollz-or-byacre-better-for-you.html
This article rings so true and my husband and I had a good laugh reading parts of it. As an independent person it’s hard seeing MS lead to more physical dependence on others. I continually have to remind myself that this wasn’t a choice and I also contribute to my family in many other ways. Thanks for always hitting the nail on the head and describing things I couldn’t articulate.
Cannot tell you how much I needed to hear all of this. Damn you have some great perspective. As a newly diagnosed gal, the accepting help part may just be the biggest struggle.
If not for my family I wouldn’t survive. It’s still difficult to ask and not feel like a B . But at least this describes it with a sense of humor. ?
You know, you don’t need to have MS to get your grapes peeled (that’s not a euphemism, right? “I’ve been looking for a woman who likes her ‘grapes peeled'”)
There are lots and lots of men who will do anything for a beautiful woman even when she could do it herself?
It took me a while, but I try to remember what Michael J. Fox said about his struggles: “It is what it is.” Don’t hesitate to ask for help when you truly need it; but don’t ask for special treatment just because you can. The first 3 or 4 years I had a handicap parking card, I used it once. Once. A decade later, I use it all the time, even though now there’s usually someone else behind the wheel. You can certainly push an elevator button, but when you fall and can’t get off the floor, asking for help makes a lot of sense!
And I love your “getting stuck in a sweater”. I know it’s going to be a Glass Half Empty Day when it takes me 4 or 5 tries to put my arm through the sleeve of a shirt. And unlike The Banker, my cat refuses to help ?
We will, most likely, continue dying – sooner or later. This fact puts everything into a perspective and is a point the able-bodied miss, understandably.
You’ll never know how much I needed to read this right now. Was sitting here sobbing and feeling sorry for myself and sorry for every time I asked for – or refused – help. Thank you so much.
Ye Yoon, the woman who gave the Ted talk you linked to, is my co-worker and I will let her know how much the message resonated on this level. I’m gonna quit wallowing in self-pity and go do something. Thanks as always.
Hi Jenny,
Thanks so much for commenting. I hope today is a better day, and I’m so glad this post resonated with you.
How cool that you work with Ye Yoon. What a small world. Her Ted Talk really helped me figure this out. I must have watched it 6 times already. (Also, Khalil Gibran’s poem: On Giving.) Please tell Ye Yoon thank you for sharing her own story, and thanks Jenny, for sharing a bit of yours. We are all of us going through something.
Beautiful post.
I think I understand things from The Banker’s perspective, or maybe it’s just me, but when someone close to me asks for help I never think of it as a burden–being able to give help when it’s asked for can provide a feeling of validation, so the helper does get something out of it, although, yeah, like you said, it’s not about keeping score, and everyone brings something regardless of their role.
I don’t want to be the aggressively helpful elevator button-pusher, though. I will press the elevator button if asked, of course, but only if asked. Otherwise I’d probably send you to the wrong floor.
Thank you. I so needed to hear that.
Also, it’s none of my business and why do I care, but have you considered saying TB instead of The Banker? When I come to those 2 words I bump into them. I mean kind of like they break the rhythm of your melodic prose. I hope you are not irritated by this suggestion. I love your writing.
Thank you for sharing this! I have an extremely hard time accepting and asking for help. I have always been the one giving help, so it’s very hard to accept it. I tend to decline while replying “I’ve got it”. This is a great reminder for me.
Hello Ardra! I haven’t commented for awhile but Covid has paused life for almost everyone. It has caused a decline in my mobility and strength. For a time there was no reason to go out because where will I go? Everything is closed! But as things very slowly begin to go back to pre-pandemic times I find myself so much weaker and I am getting PT twice a week to work on strengthening and balance. I have a particularly stubborn left hip flexor added to left foot drop. Ugh… my banker has also been home after falling while at work And is getting ready to retire at the end of April. Yes I feel like the B word every day and am trying to come to grips with stopping that! I certainly did not ask for this horrible disease and have been fighting it for 24 years now. Some days I feel like it might not be worth continuing but I have never quit and probably never will. Your articles are always timely and spot on! I love reading your point of view on things. I wish I could write as good as you do. Love to you and the Banker from a fellow warrior ❤️
Thank you for this message! Not all of us have others who help out of love. I live in a house full of givers and needers and it is such a blessing. I thank God for each one when I NEED something and when I have the chance to GIVE – not as a payback but as part of a family who share our time & talents as God intended.
I’m on the caregiving end. I like to think of it as principal over personality. It’s the MS that produces a “burden”, not the person. I like the freedom to say, “MS is a pain in our acres, isn’t it?” I like the focus that we are in this together and I like the humor that, when there’s a “B”, is shared when the vase of flowers falls on the floor.
There are so many ways that the receiver gives back to me that are helpful and make my life much easier. Having him call and make an oil change appointment for me, drop Mail in the drive-through box on his way to PT, download an app for me, place an order for curbside pick up, look up on YouTube how to drill a hole in a plaster wall to hang a picture, chop up the celery, onion and carrots for the soup, defrag the computers and update all the software that needs to be done manually, put together the shower chair we bought and much much more.
I hope you will consider this and not sell yourself short. These things are a tremendous help and lighten my load. It gives me a sense of teamwork instead of making it a life of the “B’s”. Having his help makes me feel valued.
Now I’m not suggesting that life is burden-free but they come to others as well. They just come in different forms, at different times in different ways. Some thing I find helpful it’s to remain mindful that, with every day, MS brings loss. The loss of what one was previously able to do in work or play or self-care. The loss of a certain ability for a day or two. The fear that the loss of an ability on a certain day will become a permanent loss. And, the fear of loss that the future may bring. As the person who gives care I want to always remember that there is that underlying struggle that is being wrestled with every day. The closer I can get to getting a true grasp on that the more empathy I have and providing care becomes an honor. Bless each of you in your journeys.
This post was so spot on and relatable m I’ve struggled to try to explain this to people so I was so glad to come across this post. Thank you!!