Category Archives: Relationships

Chronic Pain and the Other People in Your Life

I’m working feverishly on several projects, including three for this site alone, and those WILL be coming (by God) but in the interim, I wanted to share a few thoughts that were sparked by a conversation I had today with a writer who was interviewing me about chronic pain and two topics near and dear to my heart (and … well, other body parts): parenting and sex.

Warning: This is going to be frank. If you’re easily offended by such stuff, please exercise your mouse on over to the “back” button or the little “X” up there in the corner of your browser and clickity-click. ‘Kay? Moving on.

The interview was shortish – about half an hour or so – but we briefly touched on both topics: how chronic pain affects (A) our parenting relationships with our kids and (B) our sex lives. The chronically pained (like that? I just made it up because this whole language problem with writing about chronic pain just sucks) think and write and talk a lot about how pain affects us — but it also affects others too, and the interviewer’s questions got me thinking: both of these seemingly disparate topics are really about one thing: how chronic pain screws with our relationships with other people, and ourselves.

Chronic Pain Affects How We Interact With Others

The first thing that occurred to me was a relatively simplistic notion: chronic pain has a significant impact on how we relate to other people in our lives. It has to, because it changes our world. Anything that has that much power over our routines, our relationships to our bodies, our self-images, must also necessarily impact our relationships with others. As much as we might wish otherwise and say to ourselves, “It won’t — I won’t let it” — well, it’s wishful thinking.

So the first key, I think, is to simply acknowledge that it’s there, that it will change things, and that where our power lies is in how we react to that change. We’re not powerless, after all. As I spoke with the interviewer we began talking about the difference between pain and suffering — pain isn’t optional for us, but suffering to a large extent is optional. It arises when we resist the “what-is” in the moment, if I can get a little New Age on you for a second.

That resistance is what hurts us emotionally and what’s behind the perception of suffering. Yet many of us find that when we can simply be present with the pain — as in present, as in “not the past and not the future, not even two seconds from now” — we reduce our perception of suffering. And, of course, suffering is all about the perception. If you think you are, or you think you’re not, you’re right.

It’s Hard to Feel Sexy When You Hurt Like a Mother#*@&^%

For those of us who have had or are in romantic relationships while coping with chronic pain, our conditions have a whole other realm of impact and that’s on our sex lives.

“Ha! What sex life?” I hear some of you asking yourselves. Exactly my point.

Whether we want to admit it or not, sex is important in a relationship (well, usually). Unless you and your partner both are completely happy with how your pain has limited or changed your sex life together, then, my friend, you’ve got a problem or will soon have a problem.

Here, too, pain changes how we relate. Except that what we’re relating to differently now isn’t just another person — it’s also our own bodies as well as the relationship itself.

In my last relationship (my marriage, which ended a few years back), there were many problems — and only a few of them had anything to do with my pain. But even so, I admit that my condition(s) negatively impacted our relationship, and part of that was due to the fact that I just didn’t want to have sex.

Well, that’s not entirely true. I did. But I also … didn’t. You’ve heard the saying “the spirit is willing but the flesh is weak”? In my case, it was more like “the spirit and some parts of the flesh are on board with this but the rest of the flesh is saying ‘Oh HELL to the NO.””

It’s important to be precise.

I’ll leave the tips and advice for another post but I’ll simply say this now: sex is a crucible for the entire relationship. It’s your canary in the coal mine. If it’s off kilter, you’ve got problems elsewhere, too. (And probably vice versa.) What’s a symptom of which? Does it matter, really? You’ve got to talk about it – honestly, openly, and without prejudging what kind of response you’re going to get.

This is easier said than done, especially if your spouse has been less than supportive, I know. I have no easy answers for anyone. All I know is that the alternative — swallowing your issues and either simply refusing to play, or worse going along with whatever just to please the other party — will kill you. It will kill you literally or figuratively — in body or in psyche — but either way, it’s not living. Not really.

Parenting and Pain

One of those awesome projects I’m working on for this site is a series of posts about how to talk to your kids about chronic pain, so I don’t want to get too far into this topic right now. But I’m learning a lot from reading what the experts who are participating in this series have to say about the subject, and it’s also triggering some thinking of my own about my experiences as a single mom.

As I said to the interviewer this morning, I think kids need two things: information and reassurance. It might seem like you’re protecting your child by not being up front about your own illness with him or her, but please believe me on this point, if you believe nothing else: the little ones KNOW. They just sense things, much more than we ever suspect.

Talking to them in an age-appropriate way is the first and crucial step, I think, to being a more effective parent when you’re coping with chronic pain. And it’s not a conversation you can expect to have once and be done with it, by the way. Be prepared to go over this stuff a few times, at least. But again – more on that in the appropriate post.

For now, I just want to acknowledge for myself, publicly, that chronic pain has changed my approach to parenting. That I can’t be the parent I dreamed of being in exactly that way I envisioned anymore. But I can be even better, in some ways, by being honest with my daughter, by showing her my strength, and by trusting her enough to let her have her honest emotional and psychological response to the truth of my condition.

And maybe when we get right down to it, that’s the problem underlying all of these squirrelly issues: do we really trust the other person enough to let them respond honestly to our pain? Or are we so afraid and gunshy (for good reason, thanks to the responses we often get from those who are supposed to be providing for our medical needs) of confessing the truth about our pain that we can’t even be real with our own loved ones?

How to Be a Good Friend to Someone With Chronic Pain

Today’s post is aimed at a slightly different reader — not the fibromyalgia sufferer or any other chronic pain patient for that matter, but the friends of people with chronic pain.

The Gift of Friendship — The Challenge of Chronic Pain

I know it’s not easy being the friend of someone who’s in pain most or all of the time. You probably have a lot of mixed emotions about your friend’s new reality. You might be concerned for your friend’s prognosis. You may miss doing fun things together, or even resent how much of your friend’s time and attention her condition now consumes. You may even have some doubts about whether her health is really “that bad” — especially if she “doesn’t look sick.”

But you’re also in a wonderful position, in a way. You’ve got some objectivity, of course — the pain isn’t happening to you, so you can be an incredible source of guidance and feedback when it comes to trying new therapies or making adjustments to daily life. You’re also motivated by friendship and that means you’ve got compassion for your friend’s new challenges. That compassion is something all of us need from time to time, no one more so than a chronic pain sufferer.

Straight From the Horse’s Mouth: How You Can Be a Good Friend to a Chronic Pain Sufferer

I asked some of my “fibro-friends” on Twitter what they thought about this question: “What piece of advice would you give to someone who wanted to be a better friend to someone struggling with chronic pain?” The responses I got were incredibly moving and may help you in your quest to be a better friend.

Just Listen, Even When It’s Hard

First, they said, it would help tremendously if you would just be there for us. Be a shoulder to cry on, listen to us rant and whine on occasion when the pain stops us from doing what we really long to do. It’s hard to listen to someone you care about who’s in pain, we know, but your presence really does help. We need people to listen to us — to hear our stories — and to hear us with compassion. That’s something you can do better than anyone else.

Send Us Good Information, But Beware of Claims of “Cures”

Second, we welcome your interest in our condition. Please do keep emailing us news clippings that you find about our condition. But we do have one request: ignore the ones that say we can be “cured” with one simple supplement, or readily available substance.

For most of us, there is no cure yet, although researchers are constantly at work on these conditions and we’re all hopeful. The most that we can hope for in the immediate future, however, is successful management of our symptoms. So, check out the source of that article you’re thinking of sending. If it’s a press release, you can skip it. If it’s a true news piece, send it on.

Understand What We’re Talking About When We Say “We Hurt”

Third: please understand that our pain is not like the normal, average everyday aches and pains that almost everybody endures as they get older. This stuff is potent pain of the highest magnitude, and it interferes with everyday life.

When a fibromyalgia patient says she hurts or is experiencing a flare, for instance, you can understand what she’s going through by remembering what it feels like to have the flu — not the stuff you call the flu when you’re really just not feeling well and don’t want to go to work, but the honest-to-goodness, kills-people-every-year influenza. Remember those deep-rooted widespread body aches? That’s what a flareup feels like, only it doesn’t go away with Tylenol.

The One Thing You Should Never Say to a Chronic Pain Sufferer

So, while it’s perfectly normal to think “Well, everyone hurts now and then …” — keep that thought to yourself, please.

We know everyone hurts — but not everyone hurts like we hurt, and when you say things like that, it just makes us feel (A) terribly alone and (B) that you don’t believe us, that you think we’re just malingering. Please trust me: we’re not hypochondriacs or malingerers. We hope for nothing more out of life than one more good day, one pain-free day, and, please God, a cure for what ails us.

Grace Us With Your Presence

Finally, please don’t forget about us. It’s going to be hard, we know. Especially when we’ve both lived with this condition for awhile, and you start to realize that there’s really not much you can do to make us feel better, and there’s not much we can do to rejoin life as we used to know it.

You’re going to start telling yourself, “Well, there’s nothing I can do to help. And I know she doesn’t want to or can’t go do __________ (whatever you’ve got planned for the day).” Then, the next thing you know, you’re not calling or emailing, and we haven’t seen each other in ages.

Please resist that temptation. Even if you know we can’t join you, it still feels good to be invited from time to time.

And even though, yes, you’re right, there’s not much you can do to make us feel better, there is one thing you can do — and that’s grace us with your friendship and your presence. Call and see if you can just drop by for a chat. Tell us about fun things you’ve been doing — even if we seem envious, we’re really happy that we can at least live vicariously through you! Keep us in touch with what’s going on out there in your world, because we do care about you, even though it seems sometimes as if all we can think about is our chronic pain condition.

We need friendship, just as much as we need good pain relief and a caring, competent doctor. We hope that our pain doesn’t scare you off, because your friendship does mean so much to us. Take us as we are, but please don’t forget that underneath all the new stuff that any serious health condition brings, it’s still us in there — the same friend who’s loved you and relished your love for years.