🤍The Hidden Struggles of Connective Tissue Disorders🤍

Back in my day, some kids brought hockey cards and sticker collections to school. I brought an alarming range of ligament-based entertainment.

Sometimes hypermobility first appears as a child who seems unusually bendy or clumsy, often both at once. 🙋‍♀️

The child who sits in a W position on the floor because it feels natural.
The one who, without pausing to question it, contorts themselves into strange positions during movie night.

What they may not see is the child constantly running into walls because their body struggles to map itself properly in space. Bruises appearing mysteriously across shins. Ankles rolling on flat ground. Sleeves chewed because pain and overstimulation are difficult to explain at seven years old.

And then there are the “growing pains.”

Except many children with connective tissue disorders experience pain far beyond the occasional ache adults remember from childhood.

Deep bone pain at night.
Legs throbbing so intensely sleep becomes impossible.
Crying after gym class.
Exhaustion after seemingly normal activities.

Many hypermobile children become experts at masking early. They laugh while joints slip. They keep playing while hurting because they assume everyone else feels this too.

Some become the “dramatic” child.
Others become the “tough” one.

Honestly, I was the child trying to survive in a body I did not yet have language for.

What am I even doing bending my neck like that?

The thumb that bends too far backward.
The knees that point in unusual directions.
The shoulder that clicks when slipping in and out.
Being crazy talented in a yoga class my first day.

What people don’t see is that connective tissue is not merely a few loose ligaments behaving badly.

Connective tissue is infrastructure.

It is the architecture holding the body together. The webbing woven through blood vessels, skin, organs, fascia, tendons, heart valves, lungs, digestive systems, pelvic floor, eyes, nerves, and joints. It is scaffolding. Suspension bridge. Packaging tape. Elastic waistband. Shock absorber.

And when connective tissue is faulty, life can begin to feel like living in a house where every screw has loosened itself by half a turn.

Not enough to collapse all at once.
Enough that everything creaks. And left unchecked, more and more areas become unstable, then require constant repairs. Eventually some rooms just become unusable.

A Sad Commentary: AKA My Brush with Organized Sports

My joints approached organized sports with more enthusiasm than stability. More optimism than skill.

In a small town, everybody played volleyball or there simply wasn’t a volleyball team.

So I played volleyball.

I hated it.

Looking back now, I wonder why I stayed in as long as I did. Every practice left my forearms covered in bruises. Big ones, tiny ones, overlapping ones. I looked part Dalmatian. Nobody else seemed to bruise like that, so naturally the conclusion was that I was doing it wrong.

Turns out my connective tissue was doing it wrong. Not me.

I was terrible at volleyball. Not for lack of trying, either. I could picture exactly what my body was supposed to do, but the execution never matched the image in my head. It always felt like there was a lag between my brain and my limbs, like someone had replaced my coordination with an unreliable Wi-Fi signal.

The only part of volleyball practice I excelled at was stretching.

That should maybe have been a clue.

I could also run forever, but the muscle fatigue before, during, and after was brutal. My legs and ribs constantly felt tight and overworked, like my muscles were trying to compensate for a body that refused to stabilize itself properly.

The solution offered to me was always the same:
“Practice more.”
“You just need to focus, Pam.”
“Try harder.”
“Don’t give up so easily all the time.”

My P.E. teacher, who was also my coach, and I were not exactly compatible personalities. I suspect I ranked fairly high on his “lazy kid” list. My feelings toward him and his teaching style don’t need to be discussed for the purpose of this post. Perhaps he was doing the best he knew how 🤷‍♀️.

What hurt most was that I wasn’t used to being bad at things.

I excelled in music. Dance. Academics. If I tried something, I usually became good at it eventually. But anything involving proprioception. Balance, coordination, spatial awareness, reaction time, exposed a kind of weakness I couldn’t outwork.

No matter how hard I tried, my body never responded the way everyone else’s seemed to. I felt like I was being asked to build a stable life with elastic bands where other people were given rope.

After enough years of that experience, something in me quietly stopped trying.

Not everywhere. Just there.

I realized I could put in enormous effort and still end up with roughly the same P.E. grade as the kid half-heartedly wandering laps around the gym. So eventually, I became that kid instead. The one at the back of the class who didn’t seem invested. The one teachers assumed didn’t care whether they passed.

Stemming from humiliation in trying my hardest while looking like a fool and as though I wasn’t trying at all.

It’s an incredibly discouraging place for a young person to live.

Some kids are exhausted.
Discouraged.
In pain.
Disconnected from bodies that refuse to cooperate. In retrospect, my body had all the stability of a shopping cart with one bad wheel.

The whole point of physical education is supposedly to encourage lifelong movement and confidence in your body.

Ironically, I now walk everywhere, go to the gym regularly, and deeply value movement. I suspect that may not be the case for those classmates that achieved gold stars for gym class back in the day.

Children are often graded on visible performance without anyone asking what invisible barriers may exist underneath it. 🍌 🍌 🍌

And maybe that experience is part of why I later felt drawn toward educational support work. Because I remember exactly what it feels like to be misunderstood in a classroom. To be trying harder than anyone realizes while appearing like you are trying the least.

Some kids are not lazy.

Sometimes what looks like apathy is actually years of silent defeat.

So Much More Than Loose Joints

My body has taught me that fragility and resilience are not opposites. Sometimes they exist in the very same tissue.

People often imagine connective tissue disorders as orthopedic inconveniences.

A sore knee.
An ankle sprain.
Being exceptionally bendy.

Playing twister with my now-26-year-old. Not to brag, but I was very good.

But connective tissue does not politely stay in one department.

It influences how blood vessels constrict and relax. Why standing up can feel like gravity suddenly doubled. Why heart rates race while brushing teeth. Why exhaustion arrives not after effort, but before and during it.

It influences the skin. Fragile, stretchy, slow to heal, easily bruised.

It influences digestion. Because the digestive tract also depends on connective tissue and smooth coordination. Meals become negotiations instead of nourishment.

It influences breathing. Because the rib cage, diaphragm, and tiny structures supporting the lungs are all part of the same interconnected story.

It influences pain. Not only through injuries, but through a nervous system constantly adapting to instability. Muscles tighten to compensate. Fascia braces. The body learns vigilance.

Even sleep can become difficult when the body spends the entire night trying to hold itself together. Some people wake up refreshed. My body wakes up looking like I’ve been assembled with spare parts in low lighting. Like sleep happened near me but not directly to me.

There is loneliness in illness that hides in plain sight.

You may look healthy while internally calculating:

Can my hips handle this chair?
Will my spine tolerate the drive?
How long before the fatigue crashes in?
Is today the day I sustain an injury that sets me back a year?

People see the smile at the gatherings.
They do not see the cost afterward.

The Forest Never Demands Symmetry

One of the reasons forest therapy can feel so healing for those with any type of disorders is because the forest does not care about perfection.

Trees twist toward light.
Branches split and regrow.
Moss softens fallen things instead of condemning them.

In the forest, support is collaborative.

Roots intertwine underground. Fungi trade nutrients between struggling trees. Fallen logs become nourishment for future life. Nothing survives entirely alone.

For people living in bodies that require adaptation, slowness, pacing, and care, the forest offers a radically compassionate model of existence.

Nature does not measure worth.

Walking Practice: “Borrowing Stability”

This forest therapy practice can be done slowly while walking a trail, sidewalk, park path, or even your backyard.

As you walk, notice what in the landscape appears stable.

Perhaps it is:

  • the rootedness of a tree
  • the reliability of stone
  • the rhythm of wind
  • the resolution of moss growing over rough surfaces

Without forcing positivity, simply observe.

Now begin walking more slowly.

As each foot touches the ground, imagine you are borrowing steadiness from the earth beneath you.

Not fixing yourself.
Not overcoming your body.
Borrowing support.

You may silently repeat:

Supported.
Held.
Connected.

If your body hurts while walking, let the practice include that truth instead of resisting it.

Forest therapy is not about pretending discomfort away. It is about allowing yourself to belong exactly as you are.

Pause occasionally and place a hand on a tree trunk, railing, stone wall, or your own chest.

Notice:

  • What supports you physically?
  • What supports you emotionally?
  • What support have you been refusing because you are used to surviving alone?

Continue walking without rushing toward insight.

Sometimes healing begins the moment we stop arguing with our pace.

The Grief No One Talks About

There is grief in becoming intimate with limitation.

Grief when your mind has cheques your connective tissue cannot cash.

Grief when symptoms multiply like unwanted groupies:
fatigue, dysautonomia, chronic pain, migraines, digestive problems, instability, inflammation, sensory overwhelm.

Many connective tissue disorders do not travel alone. They tend to arrive in flocks.

Even a wounded world is feeding us.

Robin Wall Kimmerer

Hold fast. There is still beauty here.

Not the polished beauty of wellness culture that insists healing should look photogenic and triumphant. Complete. Universal.

But a quieter beauty.

The beauty of learning to listen deeply to others.
The beauty of noticing small joys because large ones became inaccessible.
The beauty of becoming tender toward bodies. Your own and others’.
The beauty of discovering that a meaningful life was never dependent on being free from pain.

The forest teaches this continually.

Decay feeds growth.
Broken branches house birds.
Burned landscapes bloom again.

I spent years believing my body’s limitations were character flaws. Turns out that limiting belief was false. Those limitations have helped me become the person I am.

To be rooted is perhaps the most important and least recognized need of the human soul.

Simone Weil

Why Forest Therapy Helps

Forest therapy is not merely getting outside.

Research continues to show time in forests can help regulate the nervous system, reduce stress hormones, lower heart rate, and support emotional well-being. But for those living with connective tissue disorders, the benefits often go deeper than measurable metrics.

Forest therapy gives permission to:

  • move slowly
  • rest without guilt
  • reconnect with sensory pleasure
  • soften hypervigilance
  • leave productivity behind temporarily
  • remember you are more than symptoms

When the nervous system lives in a constant state of adaptation, gentle sensory experiences matter.

The sound of leaves moving overhead.
The coolness of shade on inflamed skin.
Birdsong interrupting anxious thoughts.
The visual softness of green.

None of these cure a connective tissue disorder.

But they can create moments where the body feels less at war with itself.

And moments matter.

Especially when stitched together over time.

A Beautiful Life Can Still Grow Here

Instructions for living a life: Pay attention. Be astonished. Tell about it.
Mary Oliver

Living with a connective tissue disorder may mean your life unfolds differently than expected.

More pauses.
More recalculating.
More adaptation.

But different is not lesser.

Some of the most compassionate people are those whose bodies taught them interdependence.

Some of the most observant souls are those forced to slow down enough to notice life carefully.

The forest reminds us that resilience is not hardness.

Resilience is flexibility.
Relationship.
Return.

And perhaps that is fitting for people made of connective tissue. Those who understand, more than most, that life is ultimately about connection.

Not perfect strength.
Not endless endurance.

Connection.

To the earth.
To one another.
To moments of beauty that still arrive, even here.

What is to give light must endure burning.

-Viktor Frankl