Fibromyalgia, Invisible Illness, and Learning to Trust My Body
I have lived with fibromyalgia since I was about 18 years old, although I was not officially diagnosed until I was in my mid-30s.
For many years, I knew something was happening in my body, but I did not have a clear name for it. And that is one of the hardest parts of living with an invisible illness: you can be in pain, exhausted, and deeply impacted every day, while the outside world sees someone who “looks fine.”
Fibromyalgia is invisible.
When people look at me, they do not necessarily know that I live with chronic pain, fatigue, and the daily reality of managing my energy. They do not see the calculations that happen behind the scenes.
How much can I do today?
What will this cost me tomorrow?
Am I pushing too hard?
Do I need to rest before I tip into a flare?
Fibromyalgia does not define me, but it is something I live with every day.
And because it is invisible, it is often misunderstood.
One of the most painful misconceptions is that fatigue means laziness. It does not.
Fatigue from chronic illness is not the same as simply being tired. It can be whole-body exhaustion. It can affect how clearly you think, how easily you move, and how much you are able to participate in your own life.
And then there is the pain.
Pain is a huge part of fibromyalgia. It impacts your life on so many different levels, and yet people cannot see it. That can be incredibly difficult to explain. When someone cannot see what you are carrying, they may underestimate it, dismiss it, or assume it is not as serious as it really is.
That is why being believed matters so much.
Over the years, I have had to learn how to advocate for myself. Even now, many doctors do not fully understand fibromyalgia. I have walked into appointments with an agenda, a list of questions, and information I have researched ahead of time. Sometimes doctors have been surprised by how prepared I am.
But my feeling has always been: this is my body.
I know my body better than anyone else does. And if I cannot advocate for myself, who is going to?
That is something I encourage my clients, family members, and friends to remember too. If you are too sick, too tired, too overwhelmed, or too foggy to advocate for yourself alone, bring someone with you. Bring a friend. Bring a family member. Bring a list of questions. Take notes. Record the appointment if you are allowed to.
Two ears really are better than one.
When you are living with chronic illness, self-advocacy is not about being difficult. It is about making sure your experience is heard, respected, and taken seriously.
There have been times when not being believed felt demoralizing. When you hear enough doubt from the outside world, you can start to question yourself. You may wonder whether you are exaggerating, whether you are wrong, or whether you should just push through.
But I have learned to come back to this truth: I know what I feel in my body.
I also know that I want a care team that supports me, believes me, and wants the best for me. Everyone deserves that.
Living with fibromyalgia has also shaped the work I do today. I do not think I would have become a clinical and medical hypnotherapist, somatic practitioner, or coach if I had not had fibromyalgia. My lived experience informs everything I do.
A lot of clients come to me because they know I walk the walk. I understand what it means to live in a body that needs care, patience, and support. I understand what it means to have good days, not-so-good days, and bad days. I understand what it means to want to do more while also needing to honor what your body can realistically handle.
That tension is real.
There are times when the mind wants to keep going, but the body says no. There are times when I know I need to pace myself, because if I push too far, a flare may last days, weeks, or even months. If I get sick, it can take much longer for me to recover.
So I have learned to pay attention.
I have learned to notice the warning signs. I have learned to ask what my body needs. I have learned that giving myself grace is not weakness. It is wisdom.
For me, DAILY movement helps (even when I do not want to do it) and it is a non-negotiable.
That does not mean it helps everyone in the same way, and I would never suggest that there is one right answer for every person. But in my body, movement has become one of the tools that helps me manage chronic pain. Depending on the day, that might mean going to the gym, taking a walk, going to a pilates class, simply gardening/weeding in the garden moving gently or going for a swim (one of my faves!)
Sleep is another non-negotiable for me. So are practices that help my nervous system settle, like breathwork, warm baths, massage, hot tubs, and rest practices like yoga nidra. Even 20 minutes of yoga nidra during the day can feel like a reset when I am really tired.
These may sound like small things, but small things can be deeply restorative.
In my work with clients, I often begin with something simple: a few breaths.
I may invite someone to place their feet on the ground and breathe with me. After a couple of breaths, I can often see their face relax. Their shoulders drop. Their body begins to soften. They begin to return to themselves.
Sometimes that is where healing begins... not with forcing, fixing, or pushing, but with listening.
I often ask new clients, “What do you do for yourself?”
Not what do you do for everyone else.
Not what responsibilities are you managing.
Not how productive are you being.
But what do you do for yourself?
For many people, that question is surprisingly hard to answer. We are so used to being employees, parents, spouses, caregivers, business owners, and problem-solvers that we forget we are also human beings with bodies that need care.
When you live with chronic illness, caring for yourself is not optional. It is not selfish. It is part of how you stay connected to your body and your life.
I am not interested in pretending pain does not exist. I am not Pollyanna about chronic illness. Pain is real. Fatigue is real. Frustration is real. Grief is real. There are hard days, and I believe we need to be honest about that.
At the same time, I also believe we can build tools, support, and practices that help us live with more steadiness inside the reality we are in.
That is not toxic positivity. That is not bypassing pain. That is learning how to stay present with yourself.
Fibromyalgia has taught me many things. It has taught me patience. It has taught me self-advocacy. It has taught me to give myself grace. It has taught me to listen closely to my body. And it has taught me that my worth is not measured by how much I can produce, push through, or prove.
Fibromyalgia is one part of my story.
It has never defined me.
It has brought limitations at times, especially before I had a diagnosis and before I understood how to work with my body instead of constantly pushing against it. But it has not stopped me from doing meaningful things in my life. In many ways, it led me to the work I do now.
That is one of the reasons I was so grateful to be part of this conversation on Seen Not Fixed, a Spoonly podcast hosted by Nicole Pedra.
Spoonly exists to remind people living with chronic illness, caregiving responsibilities, and mental health challenges that they are not alone. The podcast creates space for honest, intimate conversations about the realities we do not always hear spoken out loud... the grief, the fatigue, the pain, the hope, the self-advocacy, and the daily courage it takes to keep going.
In this episode, I joined Nicole and chronic illness advocate Anja Vesterhus Knustad for a thoughtful conversation about invisible illness, what it means to live in a body that others may not fully understand, and how important it is to be believed. Anja shared her experience growing up with ME (myalgic encephalomyelitis) and I shared more about my own decades-long journey with fibromyalgia.
Together, we talked about the misconception of “looking fine,” the emotional impact of not being believed, the importance of learning to advocate for yourself in healthcare settings, and how hope and meaning can still exist alongside real limitations.
If you are living with fibromyalgia, ME, chronic pain, chronic fatigue, or another invisible illness, I hope you will listen to the episode. And if you love someone who is living with an invisible illness, I hope you will listen too.
Sometimes being seen starts with hearing someone else say out loud what you have been carrying quietly.
You can watch the full episode of Seen Not Fixed here:
👉 https://youtu.be/XjV1fg_aKE4?si=9HUzGsqfQw2CDFe6
If this conversation resonates with you, I invite you to learn more about the work I do supporting people navigating chronic pain through coaching, clinical hypnotherapy, and nervous system-informed tools.
My work is rooted in both professional training and lived experience. I understand how exhausting it can be to advocate for yourself, manage pain, and try to feel at home in your body again. You do not have to navigate that process alone.
To learn more or schedule a free 20-minute connection call:
👉 https://tidycal.com/lucyseligman/connection-call
learn more about the work I do regarding chronic pain here:
👉 https://lucyseligman.com/pain
So if you are living with fibromyalgia or another invisible illness, I want you to know this:
You are not lazy.
You are not making it up.
You are not weak because you need rest.
You are not less worthy because your body has limits.
You deserve to be believed.
You deserve support that sees the whole of you.
And you deserve to have a voice in your own care.
Your illness may be part of your life, but it is not all of who you are.
Keep going.