A site to help women with chronic illness ROCK their life1. As a young woman with multiple chronic illnesses, I get you—I know what it’s like to feel limited and to want more out of life. That’s why I created ChronicBabe: To help you have an amazing life in spite of illness.
Last night, I was taking a shower when I had a sudden searing, clenching pain in my chest that took my breath away. It lasted for a couple minutes, and then got a bit better, but my left arm and shoulder and neck were clenched and sore. My chest felt tight.
Was I having a heart attack? Nope. Turns out, it was a huge muscle spasm. I had never had one like that before. But WOW did it present like a heart attack. I Googled “women’s heart attack symptoms” and had almost everything on the list (minus nausea or vomiting).
But did I go to the E.R. immediately? Nope. I felt scared, but not just that I was really sick—I felt scared that the staff would judge me harshly if it turned out I wasn’t having a heart attack.
How messed up is that?!
Have you ever left the E.R. with undiagnosed symptoms?
Oh, babe—I know you have. I have, too, many times. I think it’s part of having undiagnosed chronic illness; as we try to figure out why we feel so broken, the E.R. is often the easiest place to get care for things that feel, well, emergent.
I’ve done it so many times over the past 20 years, in fact, that I’ve developed a bit of shame about it. That shame has sometimes kept me from going, because I know the odds are that they won’t find anything. Tests will come back negative, blood work won’t show anything, and they’ll throw up their hands and say “we don’t see anything wrong, so maybe you’re under stress?” And then I’ll head home, dejected, still unwell, and alone.
This pattern repeats over and over for many of us, and can begin to make us feel like it’s never worth going to the E.R. or the doctor’s office. But DO NOT stop getting checked out.
What if I had been having a heart attack?
Seriously, how terrible would it have been if I was having a heart attack, and didn’t get checked out because I was worried about being ashamed of not being sick? Super terrible. And I’m not a doctor…how should I know if I was sick enough to go to the E.R.? Google is NOT our doctor either, babe. But dang, even Google was telling me to go to the hospital last night.
My husband, Joe, got home just as I was deciding to call 911. The operator said a person should never ever neglect chest pains, and that they were sending an ambulance. Joe spoke up and said he would drive me. A few minutes later, we were in the E.R. and I was being rushed into care.
I kept saying to the nurses and docs, “I’m sure this is nothing. I have chronic pain. Maybe this is nothing.” And they kept saying, “Don’t worry, we’ve got you, we’re going to check you out right away and we’ll figure this out.” And I kept thinking, “I am wasting time and space. This is going to be nothing. Why am I even here?” Even as docs and nurses were telling me I had made the right call, I was still questioning my decision.
The shame of 20 years of mysterious, undiagnosable symptoms runs deep, y’all.
I’ve never been thankful for a muscle spasm before
A bazillion tests later, I was thanking a doctor for telling me I was having a huge muscle spasm. Who woulda thunk? He was like, “Great news! It’s a muscle spasm! You’re going to be really hurting for a few days.” And I was like, “Yay! Thanks for that great news!”
The relief on Joe’s face was clear, too. As I peeled off all of the electrodes to get dressed and go home, I kept apologizing to Joe for wasting an evening. “Stop that nonsense,” he said. “I’m here for you. I’m here for this. You had to get checked out. And it wasn’t a waste; you needed care for a muscle spasm.” Having a partner who believes in me, and who takes my health seriously, has shifted my self-esteem hugely. I think that if I didn’t have him in my life, I probably would have just stayed home, quietly panicking for hours, instead of seeking care.
Next steps for you:
If you have ever gone to the E.R. or doctor and not gotten a clear diagnosis, or been told “it’s all in your head,” or been shamed by anyone for seeking care, or felt ashamed even if everyone was kind and supportive, I encourage you to take these steps, all of which have helped me (and which I need to continue to do as well):
Bookmark some top medical sites where you know you can get reliable health info on both your computer and/or phone. I like WebMD and Mayo Clinic. That way, you won’t be tempted to just Google it—you can go quickly to the most reliable sources.
Add your primary care doctor as a favorite contact or speed dial number on your phone; bonus points if you can add a number for their triage nurse or urgent care line. That way, it’s easy to make a call to the best person to answer questions about new symptoms.
Add the friend or family member who most believes in you as a favorite contact or speed dial number on your phone. That way, you can reach out to them if you’re questioning if you need care, and they’ll tell you to take care of yourself.
Spend a little time journaling about the shame you’ve felt about undiagnosed symptoms or visits to the doc or E.R. that left you feeling like you wasted someone else’s time. Then burn those journal pages, or shred them, or scribble over them with a marker. Get out some aggression. Cut it loose. Because I don’t want you hanging on to feelings and patterns that don’t serve you. That way, you can release some of the shame.
Repeat after me: I am allowed to take care of myself. I am not obligated to understand what’s going on when I have new symptoms. It is my right and my responsibility to seek care if something new is happening that I don’t understand. Repeat this every damn day if you need to. That way, you begin to believe that you’re worth it.
I hope you never have to go to the E.R.
But if you’re having intense symptoms, and you’re not sure what they are, and you have even a smidge of a feeling that they could be serious, then GO. Your health and welfare are on the line, and you’re worth it.
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?
Sometimes, we need to come back to a foundational practice, one which I’ve learned is just that—a daily practice. I’m talking about acceptance, one of the most powerful tools we ChronicBabes have for staying AWAP.
When someone asks for my secret to thriving, I usually respond with “acceptance”
I was talking to a loved one earlier today, and he thoughtfully asked if I was out of my flare-up yet. The way he put it, actually, was “are you feeling as well as possible?”
“Yes,” I replied.
“So you’re not having as much pain as a few days ago, I take it?”
“Well, actually I have more. But I’m still AWAP,” I said.
A brief moment of quiet passed between us. “But you were traveling last week—didn’t the pain keep you from going?” he asked.
“No, I mean…the way I figure it, I’m either going to hurt at home alone, or hurt in a fun vacation house with 10 friends, so I still went on the trip.”
Another moment of quiet.
“If you figure out the secret to being AWAP even when you’re hurting so much, be sure to share it,” he asked.
“It’s acceptance, all the way.”
But what is acceptance?
Acceptance is all about getting real with all the things that ail you, and looking them right in the eye and saying “I see you, ailments. I know you are not going away, or if you are, I have no control over when that will happen… but I’m not going to let you stop me.”
It’s about saying the serenity prayer on the regular: “God (or Goddess, or Universe, or…), grant me the serenity to accept the things I cannot change, courage to changes the things I can, and wisdom to know the difference.”
Acceptance is not letting yourself Google the same symptoms over and over and over post-diagnosis, hoping to find a new “fix” and driving yourself crazy.
The practice includes asking for help when you need it, even if it’s more help than usual, and not apologizing for needing help.
Acceptance is allowing yourself time to grieve because this shit is super hard.
Practicing acceptance means doing all your regular check-ups even when your calendar is crowded with other health care appointments, because you know neglecting things like your teeth or your boobies could mean developing EVEN MORE health issues and who needs that?
Acceptance is not trying to recreate the wheel every day. Instead, it’s creating routines that take into account all your needs, so you can do all that’s possible to make the most of your day each day even if you’re hurting or flaring up.
It’s knowing that even if you feel like you’ve got it together one day, you may feel awful the next; that’s not failure. That’s just life. Each day, you can begin acceptance practice again.
Acceptance is all of this, and so much more.
How do you begin to put acceptance into practice each day, as you live with chronic illness or chronic pain?
I believe that acceptance is something we have to keep striving for…and that eventually, it doesn’t feel like a ton of work, but instead, feels like we’re making small adjustments each day.
In the beginning with my chronic illnesses, I felt like each day had a steep learning curve—like I was re-learning each day how to live in my body, and that meant mourning, and flailing, and a lot of figuring it out. It was hard to feel any sense of acceptance. But after a while, once I had built in daily routines that soothed my soul and my senses, acceptance became more of a daily check-in with myself:
“How are you doing today?”
“Not ideal, but nothing is worse, and I have a plan.”
“Cool! Keep at it. If something changes, remember all the tools you have.”
And then on really bad days, I give myself some time to mourn (ten-minute pity party, anyone?!) and then I try to adjust back to my position of acceptance:
“Wow, today is really sucky!”
“I know, right?! I’m trying so hard to accept but this seems so unfair.”
“It is, girl. You’re allowed to have a little time to be pissed or sad. But then it’s important to come back to what you know: You’re always in flux, and you never have control over it all.”
“Yeah, that’s a good reminder. I’ll to bust out my best flare-up coping tools today. It will probably be better again tomorrow, or in a few days, right?”
“Probably. It’s best to focus on today, what you’re able to do, what you appreciate, and what soothes you.”
These inner conversations are part of what I do every day to keep coming back to acceptance. It’s not a thing we work at and achieve; it’s a thing our bodies will give us daily opportunities to practice.
Hi! It’s been a little while since I posted on my blog; the winter holidays kept me busy, I’ve traveled a lot since then, and I’m coping with a handful of acute health issues…it all sapped my blogging mojo! But I’m slowly easing back into it. Today, I’m thinking about how valuable it is to have kick-ass health care provider relationships. I want to talk about why it’s important, and how you can cultivate your own.
A handful of symptoms means a handful of health care providers
i like to take selfies in doctor’s offices #hospitalglam
18. That’s the number of health care appointments I’ve had so far this year. 18! The high number reflects a variety of things: an injury that’s required a few follow-ups and special procedures; maintenance appointments like a mammogram; check-ins with my pain psychologist; a trip to a compounding pharmacy; and physical therapy appointments to try to turn around my flare-up. It’s been overwhelming, and it’s SO HARD to get any work done when I’m constantly running around! Not to mention the hospital parking fees I’ve racked up.
Harrumph. It’s enough to make a babe grumpy.
Across those 18 appointments, I’ve seen 10 different health care providers. Some were brand-new to me, and WOW is it exhausting to have to explain your whole history to a new person. Especially when you’re asking them to diagnose a tricky issue. (Like one thing I’ve had for the past week: extreme sensitivity in all of my teeth. Weird!)
But some of those health care providers have known me as long as 25 years. It’s those appointments that really help keep me sane during this crazy-making time.
You don’t have to re-tell your whole medical history at each visit
They can spot patterns in your symptoms you may not see
You cultivate a sense of trust…in each other
Your medical records are all in one place (or at least focused in a couple places)
When you’re a little late, or they need to reschedule, it’s easier to manage and you can cut each other a little slack
You feel more comforted and safe with them
These are just a few of the reasons why long-term health care provider relationships are so important. Here’s a quick story about another reason why:
My pain is unexplainable and scary, but my HCPs help
I mentioned that all of my teeth have been hurting. For a few days, I tried to be patient and hope it would improve, but I finally gave in on Sunday and went to immediate care. Without knowing my background, the doc couldn’t point to any potential cause, and couldn’t find any visible symptoms, so they prescribed a numbing mouth rinse to ease the pain. The catch: It had to be mixed by a compounding pharmacy, which I only realized after trying two other pharmacies. (A doc who’s known me a long time would have told me that!)
it’s me! right before my mammogram last week.
The next day, I had a physical therapy appointment for two other acute pain issues, and I’ve known my PT for many years. We talked about my teeth and she said it could be possible that, along with all my other current pain flare-ups and sensitivities, the nerves in my mouth and face are also inflamed. In short, that it might not even be a tooth-specific pain, but more of an overall throughout-my-body kind of pain flare-up that spread to my face. Weird!
I took that info to my dentist later in the day, and he agreed she might be right. He also said the stress of all my health issues could be causing me to grind my teeth at night, which might require a night guard… but he also knows I don’t have a history of grinding, so it’s not a big possibility. We talked for almost an hour, and finally a light bulb went on over his head. A week previous, I thought I was getting a cold, so I had consumed a lot of vitamin C-packed beverages; he said that could be the cause of the pain.
As we sat and talked, my anxiety about my symptoms lessened. Both my physical therapist and my dentist heard me, thought about many possibilities, and talked them through with me. Both of these HCPs respect me, and aim to have productive appointments—and both of them reassured me that whatever the cause, we could reduce or eliminate the pain.
I arrived at my dentist’s office with pain and anxiety at a 7 out of 10, and I left with pain and anxiety around a 4. That’s a huge difference, and just from talking it through! Plus, I felt like I understood my own anatomy better, had a few things to watch out for, and had some exercises and things to try (like a new toothpaste) so I felt empowered.
How can YOU feel that way when you leave an appointment?
That’s right, I felt EMPOWERED. I definitely do NOT feel that way after many health care appointments. But a few health care providers have been part of my team for many years, and when I see them, our conversations feel like collaborations. It makes an enormous difference. I’m so thankful.
I want YOU to feel empowered, too! The best way to do that is to build a long-term relationship with your health care providers whenever possible. A few things to aim for:
If you must switch insurance providers, petition the new provider for continuation of care with your same HCPs. Ask your HCPs to write letters to petition for continuation of care, too.
Respect boundaries with your HCP. I have my psychologist’s direct phone number, but I don’t call her all the time (that would be taking advantage of my increased access); I only call her with urgent or time-sensitive needs. Otherwise, I email her, or the office admin, as appropriate.
Ask your health care provider for the best way to connect. Maybe they like you to use the portal for some things, but call their nurses’ station for others. Maybe they’re cool with you texting them. Ask, and respect their feedback.
When you arrive for an appointment, bring relevant information like x-ray results, equipment you use, your complete current medication list, a list of concerns and symptoms to review, and a reminder of what you want to get out of the appointment.
Lead conversations with a moment of connection. Start by saying something like “I’m so glad to see you; I know you care as much as I do about reducing my symptoms, and I’m hoping that today, we can make some progress toward that goal.” By reminding your HCP up front that this is a collaboration, you’re laying a solid foundation for a good appointment.
Always say thank you. Always. (When I was finishing my appointment with my dentist yesterday, I thanked him for hearing me, respecting me, and teaching me some things that could help. He seemed to appreciate that recognition.)
If you’re not clicking with a health care provider, try to talk it through and ask for what you want different, with something like: “I know we’re trying to accomplish the same goal—helping me feel better—but I’m feeling a little rushed at our appointments. Is it possible to schedule for an extra 10 minutes so we have longer to review things?”
If it’s just not working, and you’ve tried your best, move on. Be gracious—HCPs talk to each other, so don’t burn bridges!—but get outta there. Ask your trusted friends, families, and other folks in your disease community for referrals, and specify what kind of doc you want: compassionate, patient, driven, research-focused… whatever.
It’s not always easy, or possible, to build a long-term health care provider relationship. But when it works, it makes a HUGE difference. I hope these tips help you!
What has helped you build long-term relationships with your HCPs? What hasn’t worked? Have any stories about how the stronger relationships have helped you accomplish specific goals or solve problems? Let me know! Leave your comments below. Thanks!
It’s always great to meet a fellow ChronicBabe who’s managed to craft a career despite serious illness. Noëlle Janka is that kind of woman; she lives with chronic lyme disease and a couple other health challenges, but she’s still managed to find a way to work and help people.
We interviewed each other last week about our work and other pursuits. Here’s my interview with her…I hope you’ll find it interesting and perhaps get inspired!
One of the things Noëlle offers is group coaching, which I think is a great idea for those of us who have mega-high health care costs and limited money to spend on other things. She also has a thriving yoga practice. Now, before you flinch—yoga kind of gets a bad rap—you should know that we talked a lot about how yoga is more than just the poses. It’s a practice that includes mindfulness, breathing, awareness, grounding…it’s so fully encompassing, and customizable for your needs.
It’s mid-afternoon, and I’ve got a roaring headache. My phone just crashed in the middle of an important call. My back is sore, and I’ve still got tons of work to do—but I can tell my body needs a nap. I crawl into bed, setting the alarm for an hour later…and lie there fitfully, unable to drift off to sleep. Eventually, I get up and grab a snack and a glass of water and sit down again at my desk. Now I’m even further behind than I was before, and I still feel unrested. I’m probably going to have to work well into the evening.
Or: I can ask myself to dance.
See, a friend of mine helps run a women’s dance group here in chicago called DDPP: Dance Dance Party Party. The group has three rules: no boys, no booze, no judgment. Twice a week, folks meet and take turns DJing, dancing together for an hour. You can dance however you want, and you can opt out of any song.
It’s freakin’ fantastic.
That part about “no judgment” is the thing that’s getting me on the dance floor tonight. Those two little words are a reminder to me that no matter how I show up, no one there is going to judge me. That’s especially important tonight, because I’m confident I’ll have to sit out a bunch of songs, or at least dance really slowly, perhaps just swaying or bobbing my head to the beat.
I have DDPP in my calendar as a repeating appointment, every Wednesday night and Sunday afternoon, but sometimes I don’t go because I’m tired or sore and I won’t be able to dance the way I want to. Or the way I should be able to dance.
Hear that? That is the sound of nasty self-judgment, and sometimes it creeps into my head and stops me in my tracks.
I used to dance every weekend, hitting the club scene in Chicago and staying out til all hours. I prided myself on my ability to dance well past midnight, sometimes multiple nights a week. Since I got sick more than 20 years ago, I’ve had a really hard time accepting the loss of dance in my life. It’s not that I can’t dance at all—I just can’t dance to more than a couple songs at a time, or I can’t do all the moves I want to do.
But that self-judgment is so limiting! It has kept me from pursuing a thing that brings me joy.
Tonight, I’m gonna ask myself to dance
Yes, I’ve got work to do…but I know the quality of my work won’t be very good if I work late. Better to aim for a good night’s sleep so I can get up early tomorrow and hustle.
Yes, I’m tired and sore…but I know I can put on my gym shoes and move to the beat a little bit.
Yes, my inner critic is still nagging me about what people will think if I sit down for a few of the songs…but I’m telling my inner critic to shut up! I need to feel the music.
Yes, I feel a bit like hermitting…but I know it’s good for me to see friends, and good for them to see me be vulnerable.
How bout you?
Is there something in your life that’s changed since you got sick, something that you miss? Maybe something you can still do, but not in the same way, or “not as well” as you used to be able to? Have you considered that maybe you could approach it differently? I want to know—share your experience in the comments. Thanks!
I used to really dread making it through the winter holidays with chronic illness. And I do mean “making it through”—that was the best I could hope for, never mind actually enjoying them! It felt like I had to claw my way through them.
All the ways the holidays can go poorly
While it felt like everyone else breezed from party to party, I agonized about how to manage my limited diet when facing big, luscious buffets packed with things I knew would not feel good in my body. I watched in envy as friends wore cute, sparkly heels, while I crammed my pained feet into clunky boots that could accommodate the wool socks my Raynaud’s phenomenon-having tootsies demand. And I never felt like I had the energy I wanted as I socialized, and when I did, I would sometimes find myself without a lot to talk about. When you’ve gone through an extended period of illness, or fatigue, or depression, it can be hard to make witty small talk.
And when it came to gift-giving, I frequently felt stressed out by planning, shopping, and wrapping. But mostly shopping: The malls! The driving! The carrying heavy bags! All while wearing a heavy Chicago coat in Chicago winters! I would count every penny and have to take deep breaths as I processed each purchase.
Family was sometimes tough, too. While some family members are cool, some really don’t accept my health-related limitations, and that leads to a lot of awkward conversations and situations.
It wasn’t all bad…
I mean, I’ve also had some pretty great holidays. Decorating the trees, visiting my nieces, drinking hot cocoa by a toasty fire, sledding, goofing with friends.
But let’s be real: The holiday season brings a lot of pressure. It’s hard not to succumb to the pressure to be everybody’s everything. We sometimes feel like our illness should take a vacation so we can meet the expectations of others. But that’s not how bodies work, babe. I know you know that, but the holiday season is going to try to make you feel otherwise.
So let’s talk through a few changes I’ve made during recent years that have ensured my holiday season is much more enjoyable. These definitely have not removed all the stress, but they’ve minimized it, for sure. And it gets easier every year.
5 Strategies for making the most of the holidays with chronic illness:
Stop sending holiday cards. Seriously, they cost a bunch of money, and most people barely glance at them. You spend hours shopping for them or designing them; you spend much moolah on printing or purchasing them, plus all that postage. And you wear yourself out putting together the mailings. Right? I used to spend something like $100 or more every year on them, and I would dread them so much. Why do we do this to ourselves? Some options to consider instead: Using a mailing service that sends the cards for you; here’s a list of vetted companies. Use a digital service instead, like one of these digital card services. I’ve opted to send a handful to my nearest and dearest some years; some years, I just don’t send cards. I look for other ways to connect with folks instead.
Leave them wanting more. If you’re invited to a few holiday parties, either decline some of the invitations, or pop in to each one for 30 to 60 minutes. Say hi, have a drink and a snack, or don’t, even—but thank the host/hostess and appreciate their cute decor or whatever, then LEAVE when you start to feel tired. Or leave even before then, because you may not realize you’re getting tired until you’re in the car on the way home. Pace yourself. Socializing is no fun if it wipes you out. Personally, I don’t go to more than one event in a day/night, and I try not to do more than two in a week. That means I say no to people, but they’ll get over it. Each time I say no, I try to get a one-on-one on the calendar with them for January, if I can.
Make your own traditions. For years, I visited my family in Texas for Christmas. And then for years, I visited my ex’s family in Maryland. And then I was single, and I finally realized I could decide my own tradition! That first year, I spent Christmas alone. I attended services with my best friend at her church; I had dinner at a friend’s house for hanukkah. But I had Christmas to myself, and it was so peaceful. That taught me a valuable lesson about the value of making my own new traditions. So now, my husband and I don’t host Thanksgiving dinner (which was mostly fun, but also expensive and exhausting); instead, we serve dinner at my father-in-law’s church, and share a meal with the people there. It feels good to be of service, the food is great, and we don’t have to clean up our house. We also host a tree decorating day at our house the day after Thanksgiving, and invite our friends and their kiddos over to do it up. We laugh, play games, eat fun snacks, and see the holidays through the eyes of children, who have boundless joy (and hilarious ideas about the holidays). Have some people criticized my choices, my new traditions? Yup. Do I care? Nope. They work for me.
Hydrate. Seriously, one of the easiest things you can do during times of stress is drink enough water. Especially if you’re traveling, going to parties, eating rich foods, being more active. Glug glug, girl.
Set a budget, and stick to it. In my immediate family, we accomplish this by doing a gift drawing: each person buys one gift for someone else, with a limit of $25. Easy peasy. (My nieces still get spoiled; that’s part of the fun of being Aunt Jenni!) For most other people in my life, I create handmade gifts throughout the year, like jars of dried herbs from my garden or canned jam. These are personal gifts, and I spread out the expense of the materials over months, instead of cramming it all onto my credit card in November and December. It helps me stay on budget and enjoy the gift-giving experience more.
I could go on and on, but these are my top 5 strategies. I hope one of these helps you!
Last week, I had a super-aggravating experience related to what my husband, Joe, and I jokingly refer to as one of my “fibro super powers.” But luckily, it ended in the kind of validation I think we all need.
Every sound is so loud!
Since I developed fibromyalgia 20 years ago, I have become extra-sensitive to everything—especially sound. I remember those first years post-diagnosis, when I would get frustrated about the sounds my neighbors made. I found myself plugging my ears every time an ambulance or fire truck went by, and started carrying ear plugs to wear whenever I traveled. And it’s not just the sound itself; the bass of loud music or trucks going by is also really tough on my system. And when you live in a huge city, it’s hard to escape. My amazing hearing is a terrible “super power” to have!
But no one around me seemed to experience the same sensitivity; in fact, when I would complain about the issue to people I was close to, I was mostly met with blank stares, or flat-out negation. “I don’t hear it, so I think you’re imagining it,” my ex would say. “It can’t be that loud if I can’t hear it, so can you just ignore it?” he would ask. Um, no. He certainly was not the only person to minimize or deny my experience; co-workers, friends, and family all did the same thing.
That negation was not intentional, I’m sure; I know that none of the people who did it was actively trying to hurt me. But wow, did it hurt. I learned to keep my mouth shut, even when it was causing me extreme distress. Sometimes, I would curl up in a ball in bed, with piles of covers over me, ear plugs in my ears, and just cry. It wasn’t just the constant negative sensation of the rock music from upstairs, or the nagging hum of the truck idling outside my window. The thing that hurt most was when people would shut down my concern or negate my experience.
Experiencing validation from my community
Recently, I attended a retreat for women with chronic pain. Spending a weekend with a handful of women who immediately “get” your experience is powerful. During one conversation, I discovered that at least two other people there with fibromyalgia or other chronic pain conditions also live with the intense sound experiences that I have. It was amazing—I mean, I was literally amazed by how good it felt—to be heard, and to experience validation.
Just knowing that someone understood my experience, and told me it was okay to be upset by it, made me feel like less of a freak.
My hero…on a step ladder
The place where I’m most bothered by nagging sounds is my home. The upstairs neighbors love to have loud phone conversations in the room above my home office, so I keep ear plugs on my desk. Our bedroom faces an alley, and I’ve learned to accept that I hear trash trucks every morning.
But one sound was making me feel CRAZY the other day. It was an insistent chirp chirp, like the sound of a smoke detector that wants you to know its batteries are low. It went on for two days, and it wasn’t in our condo, but it was loud enough i could hear it all the time. But Joe couldn’t hear it, unless he strained really hard. Still, he reached out to the neighbors whose places are adjacent to see if they heard it. They both said no. “It’s got to be in the basement then,” I said, but Joe thought there was no way there was a smoke detector down there.
I walked across the hall and asked my neighbor if they could hear it. “No, there’s no sound,” my neighbor said. “Maybe it’s a cat!” he said, laughing, as he shut his door. Hmmmm rhythmically beeping every 45 seconds? Nope, definitely not a cat. I mean, have you met cats?
Still, the sound went on…and eventually, Sunday night, I became a weepy mess standing in the kitchen. “I feel like I’m going crazy,” I said to Joe. “I’m not imaging this! But no one else hears it, and no one can do anything about it, and I don’t see how I can work with that in the background tomorrow.”
Joe paused. He cocked his head to the side and listened. Then he silently, slowly, started to pace around the condo, opening cupboards, shining a flashlight into corners, looking for…and listening for…something. This went on for about 20 minutes. “Let’s check the basement,” he said.
A few minutes later, he was downstairs on a step ladder, replacing the battery in a beeping smoke detector in the basement.
And then I was a blubbering mess
He came back upstairs and we hugged for a long time. I couldn’t stop crying. It was just a freakin’ smoke detector, but when you have extreme sound sensitivity and that beeping goes on for days, it can really mess with your head. I felt so relieved that he heard me and understood me—and thankful that even though the sound wasn’t bothering him, he put on his detective cap and helped me solve it.
I had no idea how much I needed that feeling of validation. When we live with invisible illness, we feel just that way: Invisible. Unimportant. Complain-y. Whiney. Misunderstood. Ignored. It can pile up and make us feel unworthy of care and support.
Today, I’m thankful for the relative quiet in my home office. And thankful for Joe, and his willingness to care for me in the way I need it. It makes me want to care even more for him, too; it makes me feel less alone with my disease experience. And it reminds me that there are people in our lives who understand, or at least respect our experience.
Do you have a hero?
I would love to hear if you’ve had a similar experience. We hear so much negative stuff about relationships that go sour when one or both people have illness. If you have a positive story to share about someone in your life who shows respect, understanding, and validation, I would love to hear it. Share it in the comments below, okay?
The ChronicBabe book—ChronicBabe 101: How to Craft an Incredible Life Beyond Illness—is on sale today!
After a few years of work, I’m thrilled to offer the first-ever ChronicBabe book! Head to ChronicBabe101.com right now to buy a print copy or ebook, and grab all kinds of bonus materials, including:
A discussion guide for book clubs
A fun habit checklist
A special bonus PDF about making friends with illness
Full audio of all the “pep squad” expert interviews in the book
10 fun life lesson videos
Swag like buttons, stickers, and wristbands
The ChronicBabe book is packed with resources for you
I organized the book into 10 “lessons” that focus on some key areas for women with chronic illness:
It all starts with learning to practice acceptance (Lesson 1)
Learn to kick those bad habits to the curb (Lesson 2)
It’s time to turn around negative thinking (Lesson 3)
Establish healthy boundaries to create confidence (Lesson 4)
Learn to love your body again (Lesson 5)
Build your “team” to maximize support (Lesson 6)
Strengthen personal relationships to weave a safety net (Lesson 7)
Adapt your education and career to boost success (Lesson 8)
Become a talented communicator (Lesson 9)
Get organized: Tips, tricks, tools, and systems (Lesson 10)
Within each lesson are interviews with guest experts, who bring their personal voices to our conversations about life with chronic illness. They include two psychologists, one doctor, a pharmacist, a career coach for people with chronic illness, three ChronicBabes with successful businesses, an executive coach, and a sexuality expert.
In addition, I included interviews with a dozen caregivers, who provide perspective on how it feels to love someone who has chronic pain or chronic illness. These perspectives may be tough to read at times, but they help us understand what they go through. This helps us to become better partners, spouses, daughters, mothers, and friends to the people who care for us the most.
Other goodies included in the ChronicBabe book:
In addition, I included homework assignments in each lesson (don’t freak out—I’m not grading you!). They offer guidance and additional resources. I’ve also included some fun “pop quizzes” throughout, designed to encourage you to think differently, explore alternative approaches, and make you laugh.
And in the back of the book, an “extra credit” section offers more than 350 website that I think are amazing resources.
Most of all, I want you to know that the book is written from me to you—in my voice as a ChronicBabe. This is because I think we’ve already more than enough dry books about our individual chronic conditions. Don’t get me wrong, those have their place. But in comparison to what you’re used to reading, this book offers a fresh voice to help you feel supported throughout your journey.
Want to learn more about how I developed this work?
If you’re here and you’re not already familiar with ChronicBabe, check out my about page to learn more about my background with chronic illness.