The Problem with a Woman’s ‘No’

Like most women I know, I am a woman who “does things.” Whether in the church, classroom, or community, I volunteer for activities and events because I enjoy doing them.

The problem with this (one of a few) is that once a woman gains a reputation of saying yes to things, even more requests for stepping up come her way. There is some good that comes with that, but also some bad. The requests begin to broaden in scope until they encompass unenjoyable, un-called-to things. They also begin to pile up, as two hours of help turn to three, then ten, and before you know it, a whole month has gone by. Sleep is lost, kids ignored, husbands relegated to last in line for attention. Nutrition and exercise fall to the wayside, and, perhaps, stress begins to manifest in physical ways.

Hence the market for self-help books teaching women the seemingly-easy skill of saying no. There are actually books—plural!—that contain hundreds of pages explaining how “no” is a word women shouldn’t be afraid to say. Those two little letters, that tiny package of a word, is truly a linguistic barrier to a happier, healthier life. If we women who “do” things could just learn no’s value, the books claim, we could better live into our actual calling, better love ourselves, our husbands, and our children. But wait! There’s more! We also wouldn’t lose friends, professional opportunities, important roles in the community, or any of those other things we’re afraid of losing should our yesses stop coming.

It isn’t just books: Pastors give this advice. Therapists. Friends. TV doctors with good intentions. And I agree with them: no-saying is a necessary skill for those of us living in a world with too high expectations and too few people to fill the roles we’ve spontaneously created then deemed essential.

But knowing intellectually that we should balance our yesses with a handful of nos is one thing; putting it into play is another.

It’s hard to step back and let something fail, go fallow, or not be done to our personal specifications. It’s even harder to let go of things that fulfill us, that intellectually stimulate us, that give us more to talk about over dinner than laundry and homework. But sometimes there are reasons we must say no, even if we’re left not just with more family and “me” time on our hands, but also with isolation, unpracticed talents, unstimulated minds, and deep sadness.

A couple of years ago I was really sick. Like go-to-the-hospital-bi-weekly sick. In that two-year season I posted on this blog a grand total of FOUR TIMES. I couldn’t even write while at home in my PJs sipping cocoa! I was living off prednisone and even with that most hated of the best loved drugs propping me up, I still just couldn’t go on being someone who “did” things.

So my husband and I decided it was time I just said no.

I emailed heads of boards and bowed out of roles. I spoke for hours, days, years it seems, with my (very supportive and understanding) pastor about church roles I could no longer fill. I let folks at my children’s school think I’d fallen off the edge of the world. I rejected clients. I just … stopped.

So I’ve been there, and you can trust me when I say that sometimes saying no is way, way harder than the overburdening of all the yesses combined.

Being out and about in the world I knew without being an integral part of how it ran was devastating. Not because of the loss of control, but because some of us, like me, were created to be in the ranks of those who do. I thrive on the yesses.

But then … it got easy.

Don’t get me wrong—it wasn’t like easy easy. Just … easier. Enjoyable, even. After the boredom and sadness passed, I started to feel better. I went off the prednisone. I had the energy to switch to a vegan diet (one of the top five best decisions I’ve ever made, by the way. Feel free to ask me about it.). I watched TV. Read books. Had an actual conversation with my husband. And then I was able to go off the immunosuppressant medication that kept me living off antibiotics.

Through this I learned that while the yesses might be life-giving, saying no can be lifesaving.

But I’m sad to say I learned another lesson as well.

I learned that the books are wrong. That our well-intentioned friends are wrong. That the TV-doctors and celebrities are wrong. Even our religious leaders are wrong.

The hard truth is that few people want to hear a no.

While many are sympathetic to the need to step back, many are not.

I was told I didn’t care about my church.

I stopped hearing from friends I’d made through shared volunteer activities.

I was excluded from certain conversations and actions I still wanted to be a part of.

I was stunned.

I readily admit it’s true we can’t always have the best of both worlds. In some roles you’re either in or out; there is no in between. It’s also true we can’t expect place holders: we snooze, we lose. And, of course, there’s the issue of reliability: will she or won’t she back out at the last minute?

Showing up is crucial—when one takes on a role or task it’s expected that she will perform it. How, especially after repeated cancellations, can others continue to rely on and trust those who no longer seem reliable? Likely they can trust that the intentions are good, but good intentions never cleaned the church kitchen, taught a Sunday School lesson, or edited a manuscript. You need an actual person for that.

So this isn’t a bright line issue.

There’s a burden on the chronically ill person to know her limitations and establish firm boundaries, even if those boundaries are disappointing. Being on a particular board may be something really relevant, important, and desired, but if all the meetings start at 8pm and you need to be asleep by 8:30pm, then not accepting the board position to begin with is essential.

There are other roles, however, that are more fluid. Roles someone can more easily step into on the fly if needed, roles that can be quickly understood and executed. Roles where a bit of delay won’t actually cause as much of an issue as others might like to think it will.

There is definitely nuance to the conversation.

But the point here isn’t to delve into each possible scenario, rather it’s to bring a hard truth to the surface for conversation: though we are taught, preached to, advised, and counseled that “no” is a viable and even respectable option, the response received to it does not always correlate with that position.

As I write this, I’m wondering if some will think this is a pity party or indictment of my various communities.

I reject both of those notions.

Let me say that I am writing this only because I hope that by bringing a real-life experience to light, those on the receiving end of “nos” may reflect on their own responsibilities as leaders and respond the way we’re taught to believe they will: sympathetically, warmly, and with understanding.

I also hope that by reading this, those who need to take a step back from some responsibilities can go into the process as better-informed decision makers. Are there things you will lose, perhaps long-term? Will some—even those you think of as friends—respond with criticism? Will people second guess you? And worse—will you begin to second guess yourself? The answer to all of these questions is a resounding … maybe.

All this begs the question: should you say no if you don’t feel up to a yes? Yes! And should you say yes if it may sometimes be dotted with nos? Well, yeah, I think you should.

My mentor, who has her own chronic health issues, explained it this way: we don’t forgo our work in this world because of illness. Yet we don’t necessarily need to live it out in times of flares or in ways that push us to the brink. Instead, we establish systems and supports that can be put into place as needed. That is one of the many things community is for, and part of successful ministry is learning to use the strengths of community wisely.

As hard as some things have been post-season-of-nos, it was worth it. I got a significant-if-limited portion of health back, reconnected with my family and myself, and made radical life changes that I will continue to reap the benefits of in the years to come. There is nothing more important than that, even ministry, as we cannot give of ourselves if there’s nothing left to give.

 

 

One of the Lucky

Yes, yes. I realize my blog has been dormant (or shall we say fallow?) for quite some time now. No need for me to go into that; if you want to know why you can read this.

But things have been improving over here in my snowy neck of the woods. Since September I’ve followed a whole food, plant-based diet (WFPB), and the results have been extreme and miraculous. Does that mean I’m cured? Nope. Right now my hands are swollen and painful, my knees and ankles ache, and my Raynaud’s is flaring because I dared to have fun outside with my kids. But man, the difference between now and pre-September is astounding and life changing and God-given. But this isn’t a post about that. It’s a post about equity in the world of chronic illness.

Over time I’ve realized ways to work around common problems encountered when living with illness and pain: Jar openers, “grabbers,” a really good cane, my Sleep Number bed, Daily Harvest, not working, having a housekeeper, my WFPB vegan diet, and a number of other things I won’t bore you with here.

Perhaps you’ve already noted that these are not inexpensive work-arounds. Me writing a blog post recommending these things to others is akin to Sheryl Sandberg telling minimum wage female employees of color they should simply lean in.

The truth is, there are Rohingya women with lupus (and men, but I will say women). There are women with lupus working physically intense and demanding jobs. There are women with lupus who are single-parenting, living in abusive relationships, a cardboard box, or facing the prospect of homelessness.

Women with lupus who are at this very moment seeking asylum, living in refugee camps, or going without life-saving medication because of the government shutdown.

I may bemoan what this illness has done to my life, but the truth is, I am one of the lucky ones.

Today I promise to count my blessings, pray for those suffering, and give thanks for all that I have. Please hold me to it.

 

 

Our New Life With Lupus

This is not a lupus* blog, and it will not become one. It is a blog, however, about my faith and my family (among other things). As such, it only makes sense that I might, on occasion, write about our new Life With Lupus (LWL).

I don’t know a lot yet about LWL. My dad had it, and passed away from it, so I guess I knew a little going into this. Don’t worry! I don’t imagine my fate will be the same, and I don’t want to pretend oh-so-dramatically that I think that. In the last ten years lupus treatment has grown by leaps and bounds, and 80-90% of those with lupus have a normal life expectancy.

Does that mean Lupus doesn’t suck? Um, no.

Because it does. It sucks a lot. Not every day, but many days. And even when it doesn’t suck, per se, it does impact each day in some way, whether big or small.

There are a lot of things that come along with a diagnosis (finally! A diagnosis!): relief, mourning, anger, denial, frustration, disbelief, etc. It’s really the seven stages of grief. I think I’m in the acceptance stage now because I’ve decided that I can be open about it, and even write about it here.

Honestly, there’s some very good stuff that comes from a diagnosis of a serious chronic illness. I signed up recently for a Lupus support website, and it asks all new members to answer questions for their profile. One question is, “Knowing what I know now, what I recommend to others is…”

My answer?

Love your kids, your partner, your parents, your friends. Love yourself. Love your neighbors, the homeless guy on the street, the business exec on the street, and everyone in between. Learn to say, “there’s no rush,” and truly mean it. Learn to say “no.” Learn to say “yes” when possible, but give the caveat that you might just have to flake. Flake if needed. REDUCE STRESS. Use your community; they truly want to help. Never take them for granted or misuse their help. Find a good rheumatologist, but always do your own research. You can diagnosis in 2 days of googling what might take even the best rheumy three months to diagnose. That said, beware of the internet and what you Google. Take pictures of rashes, swelling, hairballs, splinter hemorrhages and anything else you can. Because, of course, the day of your long-awaited appointment everything will clear up and you won’t be able to make your case. Download the “My Pain Diary” app, and use it not for pain, per se, but for all the other medical things you need to keep up with. Eat right, exercise, rest, and stay positive.

 Sure, there are things I could add (many things!), but these are the bones of it.

I’ve had a lot of loss in life, and so I always assume that I’m already living life pretty well aware of its importance and fleeting nature. I get on my little kids’ level and look them in the eye when they speak. I don’t giggle and brush away the silly things they take seriously; there are too few years they will be honest enough to say what they think, and perhaps even fewer years that they’ll care what I say in response. I try to ignore my cell phone and computer when they’re home (goodness, the two little ones are home a lot!), and I try to drop little tidbits from the past, my past, into the life of my oldest. Someday they will want to know it all; no use beating around too many bushes. I try to have dance parties, and not sweat the small stuff, and have lots of white space so “I don’t have time” are four words I seldom have to say. Do I always succeed? Of course not.

My point here is that I thought I already fully realized and appreciated the time I have here on Earth. But let me just say that there is nothing like hearing certain words from a doctor to make you really realize and appreciate the fleeting nature of things.

That sounds awfully serious given medical advances and that the numbers are significantly on my side. But that’s neither here nor there in the late night and early morning hours when one’s mind turns from all the rational things we focus on during the more civilized hours, to all the irrational things we pretend we’re too grounded to think about.

Because really, we aren’t that grounded. Or perhaps it’s just me.

Perspective shifts. Hermeneutics readjust. And yes, love and appreciation and faith grow.

Most mornings my little kids and I sing Rise and Shine together to get our days going. Often we follow it up by singing Psalm 118:24:

This is the day that the Lord has made,
Let us rejoice and be glad in it.

These are the words I will bind to their wrists and put upon their foreheads. These are the words I will live.


* SLE in my case (and my dad’s)

There are tons of resources online, but here are a few:

http://www.lupus.org

http://www.mollysfund.org

http://www.lupusny.org/about-lupus/lupus-links

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