It’s not easy to talk to folks about being in a flare-up: being in constant pain, experiencing unyielding fatigue, spending hours on the toilet every day, having daily anxiety attacks. That’s been my life since mid-January, and it’s only just now starting to ease up. So I’ve had a good bit of practice when it comes to talking to people about being in a mysterious months-long flare-up.
What’s a flare-up like for me?
A fibromyalgia flare-up for me has all of the above symptoms and more. Sometimes my skin itches all over; sometimes I get rashes. A couple months ago, all of my teeth hurt. I sometimes have a ringing in my ears and a feeling of vertigo. Some days, I have ALL of these, all at once.
I’m a regular party over here, right?!
It’s hard to remain upbeat
As you move through life in flare-up mode, it can be hard to keep your mood positive, even for part of the day. Those of us who’ve been sick a long time may know how to muscle through some of it, and not really show how bad we’re feeling, because we have kids, or work, or commitments that can’t be ignored. So we’re often quietly suffering and not speaking about it. (Those who know us very well might still recognize the struggle in our faces.)
Talking endlessly about how bad we feel is NOT a good way to boost our mood. While it can feel good sometimes to vent to a friend or your therapist, doing it many times, day after day, is not something I recommend. You’ll get tired of hearing yourself complain, and by repeating the mantra of suffering over and over, you’re drilling in the message that you’re nothing but the suffering. After some time, it can begin to feel like you’ll never come out of it—and once you hit that stage, it is indeed hard to climb out of the hole emotionally.
So I recommend that you choose a couple people close to you to confide in, and then pledge to yourself that you will try not to focus on repeating your list of ailments day in and day out. Fill in that space with reminders to yourself of the things that ARE going right.
With the people you feel comfortable talking to about all the details, go ahead and vent—but also do two things for yourself and for them. First, put some kind of time constraint on the venting. You get to do it once a day, for example, or a single venting conversation can’t be longer than 15 minutes long. It’s healthy to get things off your chest, but not healthy to wallow…get the difference? Second, always make sure you make as much time to ask THEM about their lives as you spend talking about yours. That way, you’re being a good friend or partner, you’re helping them, and you may get a feeling of lightness from hearing about their experience.
I’m honest, but don’t reveal much to most people
What I choose to reveal to people depends on who I’m talking to. Ultra-supportive friends may get the really deep info, with all the gory details, when I really need to vent. My husband? He hears it all. Family members who aren’t very supportive get minimal information. My doctors? They hear it all, and they get to see all my lab results. Acquaintances in the two volunteer groups I participate in might get some surface information, but not much more than that.
It’s important to me to be real with the people in my support network. Sometimes they ask me if I want to spill all the details, and I appreciate that they ask. It gives me the opportunity to choose what to reveal. And knowing that I can just say, “I’m really in a bad way today, but don’t want to review all the details—it’s such a bummer” is a big relief.
When someone who’s unsupportive (or an acquaintance) pries for more detail after I say “it’s been a rough couple months, but I’m slightly better now and headed in the right direction,” I redirect the conversation. I’ll answer with something like: “The details are boring, but the main point is, I’m slowly improving. How are YOU?” Don’t let yourself get talked into revealing more detail than you’re comfortable with sharing.
I try to never be dishonest about how I’m doing. When people ask me how I’m doing, I almost never say “fine” when I mean “shitty.” When I misrepresent myself, I feel even worse. The one exception to this is service workers. The person operating the checkout at the grocery store does not need to hear that I’m shitty, especially when they have such a physically demanding job. The waiter who brings me my cup of tea at a cafe does not need a rundown of my symptoms. I feel fine about saying I’m “fine” to those folks. Why burden them with extra tough stuff in these fleeting interactions?
People often want to hear you’re doing well, because it’s so painful for them to hear that you’re not
You will experience some conversations that feel awkward (or awful) because it’s clear that the other person just wants you to say that you’re okay. I have one person like that in my life; she never asks “how are you?” but instead asks “are you better yet?” She leads with an expectation, every time. And when I have to disappoint her over and over, it makes me feel very sad—partly because I know she’s feeling disappointed, and partly because I’m not getting the support I crave from her.
It can be very painful for those who love you to hear that you’re not okay. And sometimes, they may not understand how to talk to you in a way that opens the door to deeper conversations, and instead they’ll lead with expectations that you can’t meet. You may want to try speaking to them about what kind of support you need, by saying something like: “It’s a difficult time right now. I know you care, and I appreciate that. It would help me if our conversations didn’t lead with my health, and if you could ask me open-ended questions…is that something we can try?” If you’re lucky, you’ll get a positive response; keep in mind that if a person is learning a new conversational model, it may take them a few tries before they get it right, so be patient.
If the person is not receptive to that kind of request, you may wish to choose to offer simple replies that ease the conversation to easier topics. (In my example above, I’m not even going to ask her, because I’ve asked for years and she just doesn’t get it.) If they ask “are you better yet?” you may want to respond with “not yet, but I’m better” or “I’m a little better, thanks—how are you?” You are allowed to keep it simple…in fact, I highly recommend that you always keep it simple with these folks. There’s no need for you to wear out your heart trying over and over again to teach them to support you the way you need it.
Remember: Most people come from a place of care and love, even if their comments are unintentionally hurtful
I’m including this reminder for myself, too. Even when someone is utterly clueless when they ask you about your health, their question likely comes from a place of care or love. When I’m able to remember this, it means I’m less likely to get pissed off when someone says something really dumb, like “but it’s been months—shouldn’t you be better by now?”
Above all else, always take time to be honest with yourself
When we go through these very difficult times, it’s important to be honest with ourselves about how we’re feeling. Unrecognized feelings or emotions we’re not honoring can build up until we explode, and that’s no good for our mental and physical health.
Keep a journal, written or spoken. Never mind trying to create beautiful prose; you can keep it simple. Spend a few minutes a day writing about how you’re feeling, both physically and emotionally. When you’re consistent, you may begin to see patterns that can help you learn to take better care of yourself. (For example, my journal revealed a terrible pattern of eating junk food when I was feeling tired; by switching to high-protein snacks and lots of fruit, I was able to boost my energy a little bit…and I’ll take every ounce of energy I can get!)
A journal is only for you, so be as honest as you can be, even about the most secret things you’re thinking. If you find that you need extra help, make sure to speak with a professional, like a counselor or therapist. Mega-flare-ups can really do a number on our mental health, so make sure to take care of your spirit as much as your heart.
Want to talk more about having tricky conversations or coping with difficult people?
A quick note: We’ve been talking about having difficult conversations over in my membership program, the Secret Club. We’ll continue that conversation – including lots of info on coping with difficult people – in May. Want to join us?