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Originally shared in Episode 187 of the Fibromyalgia Podcast®, adapted for readers of The Fibro Compass℠.
Good care is not extra or optional — and you’re not being extra or too much by wanting it.
If you've ever left a doctor's office feeling dismissed, confused, rushed, or just alone in what you were going through — let me tell you about a recent experience I had.
If you read my recent article on the hidden impact of uncertainty, you learned how uncertainty about a medical situation was completely derailing my brain for a while.
Today, I want to tell you what surprised me in a good way about the experience. And don't worry if you haven't read that article yet — this one will still make complete sense.
This isn't a story of finally finding good doctors. I already have amazing doctors.
This is about a whole different level of care.
The Biopsy That Changed How I Think About Care
While I would never sign up for a breast biopsy just for fun, it was also one of the most profound — and dare I say loving — experiences I've ever had in a medical setting. The way the team took care of me changed the entire experience. Mentally. Emotionally. Physically. Nervous-system-ly.
When I arrived the day of my procedure, the tech — the same woman who normally does my mammograms — explained the entire procedure in detail to me. Then, the doctor came in and explained it again. I knew completely everything that was going to happen to me. That alone calmed my fears more than I expected.
"I'm Going to Hold Your Hand Now"
Here's where it gets interesting. I'm in a chair, pushed up to the mammogram machine. They explained that most people actually do better if they don't see what's happening and told me to look off to the right. I immediately said, "Yep, I'm one of those people. Do what you need to do, but I don't want to see it." I'm the same way when I get blood drawn or have acupuncture. I don't love needles. Never have.
The tech positioned herself to my right side and said, "Just look at me and talk to me. I'll explain everything that's happening." And she did. "You're going to feel a little wetness as he cleans your skin with the disinfectant." "You're going to hear a little noise — here's what the machine is doing." Every sound, every sensation, explained before it ever occurred.
And then she said.... "I'm going to hold your hand now."
I mean, what???
She took my hand in hers and put her other hand on my back.
Let me tell you, it sounds weird to say this out loud — a stranger holding my hand — but I just about lost it. I almost started crying right then and there.
The thing is — if she had asked me, I would have said, "Nah, I'm fine. You don't need to hold my hand. I'm a big girl."
But apparently my emotional self, my nervous system, my brain needed something that I didn't even know I needed. If she had asked, I for sure would have said no.
But clearly, I needed it — and she held my hand through the whole thing. She even squeezed my hand at a few points so I wouldn't feel so bad squeezing hers back when I was scared. (true story)
At one point, she and the doctor needed to leave to check the biopsy sample — and another person came in to stay with me, to keep me company and just chat with me to keep my mind off things.
They never left me alone — not for a second — to start thinking, worrying, and stressing about what was happening.
I also noticed that they kept everything moving along. Not rushing, but not making me sit there and wait either — because you know how it is, right? If you sit there too long waiting, it just gets worse.
The best way to sum up my experience is that it was obvious they understood they were caring for a person having a biopsy — not simply just doing a biopsy.
There was so much humanness to it all.
When I walked out to my car, I saw a sign that said "Hello Humankindness" — their motto — and that is exactly what I received: human kindness.
The Power of Lived Understanding
Here's the secret — while the tech was putting on my bandage after the procedure, she told me that she'd had the same procedure done herself just a few weeks earlier.
Now, I don't know if that changed how she cared for her patients — whether she always held their hand or if something shifted after her own experience — but you know it factored in.
When you have that lived understanding of being through something yourself, you have a deeper level of knowledge and appreciation for what someone is going through.
Someone who's going through the same thing can give you a level of empathy that someone who just cares about you — but hasn't experienced it — simply can't match. Her body and her nervous system understood what I was going through — and honestly, knew what I needed even when I didn't.
And it struck me — not to state the obvious — that that's exactly what a Certified Fibromyalgia Coach® does. We all have fibromyalgia. We understand you in a way that your doctor most likely never will, unless they have fibromyalgia themselves.
Even now, I get emotional thinking back to how cared for I felt. It was exactly what I needed. I had to go through something unpleasant, and they made it as easy as possible.
When we were done, the tech asked me how I felt. I said, "You know, that actually wasn't that bad." And the thing that made it not so bad was her care.
Right before the procedure — and about to experience a level of care I wasn't expecting.
Unapologetic Self-Care: What Happened Before I Ever Arrived
Now, I understand that you can't always make sure you receive that level of care. You can advocate for it, sure. But sometimes that kind of care is a gift from heaven. It certainly was for me.
What you can always do, however, is give yourself that kind of care.
I like to call it unapologetic self-care.
You do not need to apologize for what you need. What you need is what you need. Period.
This isn't about pampering or overreacting or being dramatic.
It's about responding to something real that's happening in your body and in your life, and providing yourself the real support you need to go through it.
For me, a lot of that self-care happened as preparation.
- I cleared my calendar so I wouldn't walk in already stressed from traffic or rushing from my last class.
- I planned for my recovery, scheduling the appointment on a day where I had no classes and a light week following.
- I made sure I was well rested and well fed — because when we're tired and our blood sugar is low, our capacity to handle stress goes way down.
- I took extra supplements designed to support the neurotransmitters that help us deal with stress.
- And yes, I took some extra medication. I'll be honest, I took some pain meds and a Xanax before the procedure.
Whatever you may think about medications, I personally see them as tools. It's no different to me than an ice pack, a heating pad, a handicap parking pass, or a stool in the shower. These are tools.
You do not get bonus points for white knuckling your way through life without using any tools.
Did I actually need all these things? Maybe. Maybe not. But I've learned to think — and I'm teaching you to think — about preventing pain and stress more than simply alleviating it once you're in a flare.
When the Nervous System Takes Over
To be honest, the procedure didn't hurt much at all. I had an ice pack in my bra for that day, and I didn't even take any Advil or Tylenol afterward. But my nervous system? Different story.
It turned out that the added stress of the procedure caused all kinds of things that I didn't anticipate, even with all my preparation.
I couldn't focus to get my work done. I was exhausted, even when I got my normal amount of sleep. My brain just wasn't fully functioning. (See my article Is This An Excuse… Or Is It Real? The Hidden Impact of Uncertainty.)
So I practiced what I preach: I treated what was happening as real. I canceled some plans. I laid down on the couch and took a nap. I slept in. I went to bed early. I moved deadlines around so I didn't have to make any major decisions.
I realize not everybody can do all of that — I'm my own boss, and I'm the one who decides what the deadlines are.
But this is where advocating for your needs comes in:
- Maybe you need to go to your family and say, "I'm going to need more help than I thought."
- Maybe you need to tell your boss, "This took more out of me than I expected."
- Maybe you let people know what's going on — they don't need all the gory details — but just, "Hey, I'm going through something right now. I need a little extra grace." That is completely fine.
In my case, I told my students what was going on: "My brain isn't all here. You might need to remind me about a few things. I might not be as timely as I like to be." And people understood. The world kept spinning.
Good Care Literally Changes What Your Body Experiences
There's a bigger lesson in all of this.
There's the practical piece — plan ahead, use the tools at your disposal, advocate for what you need.
But there's a second lesson that goes deeper.
The right care actually changes what your body experiences. It's not extra. It's not a bonus. It's not fluff.
The care I received changed how my body experienced what was happening. It changed my fear level. It allowed my body to relax and not be so tense. It allowed my nervous system to recover more quickly.
And it almost certainly caused less pain — because you know how it is with fibromyalgia. Fibromyalgia is an amplifier. It will turn up the volume on any pain we feel. But because my nervous system was calm, the volume stayed down.
Good care didn't just change how I felt or thought about the experience.
It changed my emotional experience — instead of a traumatic event, it was weirdly a positive one.
It changed my physical experience.
It changed how quickly I recovered.
It changed how my body felt.
What People with Fibromyalgia Actually Deserve
This is the kind of care people with fibromyalgia deserve.
Not just "you have fibromyalgia, learn to live with it."
Not just "here's a brochure."
Not even "here's some prescriptions and go take these supplements."
We deserve the explanation of what's going to happen next. What you're going to feel and experience.
We deserve preparation.
We deserve someone who is in partnership with us — someone who is holding your hand and squeezing it at the scary parts.
We deserve that humanity. That human kindness.
We deserve care that is aware that we have a nervous system that is easily triggered — that the switch between calm and fight-or-flight changes quickly and easily, and then we get stuck.
We deserve whole-person care — and I don't just mean your whole physical body. I mean who you are: your emotions, your thoughts, your fears, your history, your spirituality. Your whole everything.
We deserve care that recognizes this is a whole person, not just a body.
Feeling Less Scared Matters
One of our podcast listeners in Arizona emailed me after she connected with her coach, Jeanette:
"I have felt so alone trying to navigate my phobia of doctor offices and everyone just passing me along. Actually connecting to another fibro patient — someone who's also a mother — makes me feel less scared."
That's exactly what I'm talking about here.
Feeling less scared.
Feeling understood.
Feeling like you don't have to go through all of this alone.
Having somebody actually tell you not just how to manage your fibromyalgia — but how to get your life back.
So many of us have that doctor phobia — that medical PTSD.
We've had enough bad experiences that we dread going back. Maybe it's not that something terrible happened, but that you were dismissed, told it was all in your head, or just passed along to the next person.
We deserve better than that. We really do. Just basic human kindness is better than that.
Three Questions Worth Pondering
The reason I'm sharing my experience is because there are some questions I want you to think about.
1. What helps your body feel cared for and safe?
You might not know the answer — and that's okay. The goal is to start paying attention. When you're in a space where you do feel cared for and safe, what's happening around you? If you want help exploring what helps your body feel cared for and safe, download my free Body's Owner's Manual Starter Kit. It will walk you through the same exercise I teach in my classes to help you reconnect with your body and begin discovering what is true for you and your body.
2. Where do you need more care and support?
Maybe it's something physical — "I need help around the house." Maybe it's emotional — "I need someone I can talk to about how I really feel." Maybe it's something super specific — "My headaches are really getting in the way and I need someone to help me manage them better." It could be anything. What do YOU need?
3. What would unapologetic self-care actually look like for you?
As one of our Certified Coaches said — and I love this — "Over-the-top self-care for somebody else is our baseline." Taking care of a fibro body needs a lot of love, a lot of support, and a lot of care. For somebody else, that might look extra. But for us? That's just a Tuesday. That's our every day.
Sometimes good care is someone else giving you human kindness.
Sometimes it's you giving yourself that same kindness.
The way we talk to ourselves matters. If there was a billboard over your head displaying the way you talk to yourself, would you be okay with it... or horrified? So often we talk to ourselves in ways we would never speak to someone else.
Are you treating yourself with grace and understanding… or with criticism you would never use on someone you love?
Please take good care of yourself, and remember —
Good care literally changes how your body experiences what's happening to you — and you deserve the best care possible.
Start Writing Your Body's Owner's Manual
One of the biggest challenges with fibromyalgia is that nobody teaches you how to understand the messages your body is sending you.
That's exactly why I created this free starter kit — to help you begin understanding your body's signals and what helps you feel cared for and safe.
You'll get the same guide and exercises I use with all my students as they begin writing their body's owner's manual.
Action Steps
1. Identify your care anchors. Think about what helps your body feel cared for and safe. Is it a specific person? A physical sensation? A routine? Start paying attention to the moments when your nervous system actually calms down.
2. Practice unapologetic self-care before your next stressful event. Whether it's a medical appointment, a busy week, or something emotionally difficult — plan ahead. Clear your calendar. Rest. Fuel your body. Use every tool at your disposal without guilt.
3. Ask for the care you need. Tell someone what's going on — your family, your boss, your support community. You don't need to share every detail. Just: "I'm going through something right now. I need a little extra grace."
You don't have to figure this out alone.
The thing that helps you get your life back isn’t another brochure. Maybe not even another specialist appointment.
It’s having someone who actually understands what you're going through and what you need — even when you don’t know yourself. Someone who can help you make sense of what’s happening in your body, think through your next steps, and support you through the hard parts. Someone who has been there, done that, and can guide you through it too.
Schedule a consultation with a Certified Fibromyalgia Coach®, and discover what it feels like to have someone in your corner who truly understands — not just what you're dealing with, but what you need to finally get your life back.
Photo Credits
- Header photo: izusek / iStock
- All other images courtesy of Tami Stackelhouse
About Tami Stackelhouse
Tami Stackelhouse is an award-winning author, founder of the International Fibromyalgia Coaching Institute (IFCI), and one of the most influential voices in fibromyalgia today, having helped hundreds of thousands of people worldwide rethink what is possible with fibromyalgia. Through her signature Fibromyalgia Wellness Framework℠, Tami is helping transform the way fibromyalgia is understood, supported, and lived — moving people beyond symptom management and into a future they once believed was out of reach.
Photo by Emily Broadbent
