Learning to Live Alongside Pain: Susanne’s Story Living With Fibromyalgia
Learning to Live Alongside Pain: Susanne’s Story Living With Fibromyalgia
When people talk about Fibromyalgia, they often focus on the pain.
But for many people, the condition affects much more than that.
It affects energy.
Recovery.
Work.
Relationships.
Daily routines.
The nervous system.
And over time, it changes how life needs to be structured in order to become sustainable.
This is Susanne’s story about living with Fibromyalgia, learning to adapt around pain, and finding ways to continue building a meaningful life alongside chronic illness.
“I Realized My Pain Wasn’t Normal”
“My fibromyalgia was diagnosed in 2000. But the pain started several years before.
I had to change doctors because they couldn’t understand the level of my pain. I was a gymnast and used to muscle pain. But one day I realized my pain wasn’t normal.”
Like many people living with chronic illness, Susanne experienced a long period where her symptoms were not fully understood.
“The doctor’s recommendations were:
‘No stress.’
‘It’s in your head.’
Or:
‘Start exercising.’
Except I already worked out almost every day.”
This is something many people with Fibromyalgia experience before diagnosis.
Because the condition is invisible, people are often expected to continue functioning normally despite living with widespread pain and exhaustion.
And when symptoms don’t clearly appear on tests, people are often left trying to explain experiences that are very difficult to put into words.
Learning Without Support
“I quickly learned that no one in the care system had any knowledge about fibromyalgia.
So I started talking to relatives and searching for information myself.”
Over time, Susanne began recognizing patterns in her family history.
“My granny was diagnosed with Psoriatic Arthritis and her sister had Fibromyalgia. So I had a pretty good idea of what my pain was.”
At the same time, life still needed to continue.
“I was married with three kids, two dogs, worked full-time as an office manager, and lived in a big house with a garden.
My husband worked away during the weeks, so I took care of everything.”
This is something many people living with chronic illness recognize:
the constant balancing act between symptoms, responsibilities, and survival.
Very often, people continue steamrolling themselves simply because there doesn’t feel like there’s another option.
“The Pain Gets Into Your Soul”
“The pain got worse and I understand why some people would do anything to get relief from it.
The pain gets into your soul, heart, and mind — and eventually you become depressed.”
One of the hardest things about chronic pain is that it rarely stays only physical.
Long-term pain affects sleep, concentration, emotional regulation, energy availability, and nervous system recovery.
And because Fibromyalgia fluctuates, people often spend years trying to adapt to something that changes constantly.
Some days may feel manageable.
Other days, even small things can feel overwhelming.
That unpredictability can become exhausting in itself.
Diagnosis Didn’t Remove the Reality
“When I finally was diagnosed with fibromyalgia, it didn’t really change anything for me.
I still had to fight for my right to get help.
I was alone trying to learn how to live with this chronic illness.”
This is something that often goes unspoken about diagnosis.
Diagnosis can provide language and validation.
It can explain patterns that previously made no sense.
But diagnosis does not automatically remove the reality of living with chronic illness.
For many people, diagnosis is actually the beginning of learning how to live more sustainably with the body they have.
Learning to Build Balance Around Pain
“I’ve learned to keep my life in balance.
I try to do things that give me positive pain.
I would rather have pain because I’ve been travelling or because I played hide and seek with my grandkids.”
This part of Susanne’s story feels especially important.
Because pacing and sustainable living are not always about removing activity completely.
Sometimes they are about becoming more intentional with where energy goes.
Pain may still exist.
Exhaustion may still happen.
But awareness can help people make clearer decisions around what feels meaningful enough to spend energy on.
“My pain is never going away, so I need to choose how I relate to it.
Always staying home, doing nothing, and complaining about my pain won’t help me.
So I travel, take care of our grandchildren, play bridge, and exercise with our dog.
It gives me energy to keep living.”
That balance looks different for everyone.
And it often changes throughout life.
But many people living with chronic illness eventually begin asking:
What actually matters most to me?
What do I want my limited energy to go toward?
Sometimes that question changes everything.
The Emotional Weight of Constant Fighting
“Today I live in a small village with my husband and our dog, Frasse.
Luckily, I don’t have to fight with Försäkringskassan, the Swedish government agency responsible for sickness and disability benefits, because my husband has his own company. We decided it wasn’t worth the fight.”
One of the things that often affects people living with chronic illness most deeply is not only the illness itself, but the constant need to prove that they are sick enough.
The emotional weight of:
appointments
paperwork
assessments
medical disbelief
financial uncertainty
and constantly explaining yourself
can become another layer of exhaustion on top of the illness itself.
“I feel sad when I hear people talk about their fights with doctors and Försäkringskassan.
It’s crazy that sick people continue being treated like this.
Don’t they realize it makes people even more sick?”
Many people living with chronic illness recognize this experience.
Not because the situations are identical.
But because long-term illness often requires an enormous amount of invisible emotional labor.
Living Differently, Not Giving Up
One of the strongest parts of Susanne’s story is that it doesn’t present adaptation as defeat.
It presents it as reality.
A quieter life.
More balance.
Different priorities.
More intentional energy use.
More awareness around what supports well-being and what drains it.
Not because life became smaller.
But because sustainability became necessary.
Living with Fibromyalgia often means continuously adjusting around fluctuating pain and energy.
And while there is no quick solution, many people gradually begin finding ways to build lives that work more with their body instead of constantly against it.
Sometimes that begins with recognition.
Sometimes with pacing.
Sometimes with letting go of expectations that were never sustainable to begin with.
And sometimes simply with realizing:
you are not the only one living this way.
Reflection
Many people living with Fibromyalgia spend years trying to understand symptoms that are difficult to explain to others.
Stories like Susanne’s matter because they create recognition.
Not everyone’s experience will look the same.
But seeing parts of yourself reflected somewhere can sometimes make the experience feel slightly less lonely.
And sometimes that recognition is where understanding begins.
Sources
Information about Fibromyalgia symptoms and treatment approaches:
Lived experience story shared with permission by Susanne.
