Grief and Identity Loss with Hypermobility and EDS: Moving Forward with Compassion

Estimated reading time: 9 minutesGrief isn’t something we talk about enough in the chronic illness world, but it can be very real for many people.

Some of us may be familiar with the grief of losing a loved one.

I first experienced this in 2017 when my mum passed away. It was an incredibly difficult time, and I was dealing with feelings and emotions I had never had before.

I still think of my mum every single day. I still miss her. And the intensity of those initial months has lessened. I can function on a daily basis.

But there is another kind of grief that isn’t spoken about as often. A kind of grief that no one really prepares you for. This grief can come when you live with Ehlers-Danlos syndrome and symptomatic hypermobility.

I think I’ve been through various stages of this kind of grief in my life without recognizing it.

As a young teenager, I had to give up cross-country running due to excruciating knee pain. I soon stopped all exercise after that. It was many years before I returned to exercise.

As a parent, I would compare myself to other parents who seemed to have more energy than me. I used to watch other mums chatting, planning outings, and organizing nights out. I was so fatigued that I could not keep up. I grieved for the energy I didn’t have.

And then, when my chronic joint pain led me to Pilates, and I became a movement professional myself, I faced new standards. As a professional, there are certain expectations of ability and stamina, and I would compare myself to the teacher and other students.

I grieved that ease, the power, and the way they didn’t get injured as much as I did.

In the fitness world, people market their image, and they demonstrate their abilities and strength. Chronic illness disrupts that narrative.

I realized that I was not less of a movement professional because of my EDS, but I was someone who had to redefine what movement can actually look like and mean for chronic illness.

Now, I teach and move from a very different place.

In this blog, we’ll discuss this more in depth. I’ve also asked psychotherapist Kim Clayden for tips on navigating grief.

Key Takeaways

• Grief with chronic illness comes in waves, resurfacing with symptom changes and milestones. This cyclical pattern is normal, not a sign of failure.
• You may experience loss of identity and disenfranchised grief (grief that goes unrecognized). Both are valid, and you don’t need permission to grieve.
• Grief and hope can exist together. Gentle movement and community support can help you process loss while rebuilding trust with your body.
• Brain-based tools like naming your feelings, diaphragmatic breathing, self-compassion, and micro-goals help your nervous system process grief. Professional support is also valuable and not a sign of weakness.

Why Grief with Chronic Illness Is Different

Chronic illness grief is different because it is often about losing parts of ourselves. Maybe your body started to let you down with pain, subluxations, and instability. Or maybe the energy you once had is no longer there. The ease you didn’t even realise you were relying on disappears.

But when you live with a long-term condition, grief doesn’t arrive once and leave. It comes in waves. It resurfaces at milestones. It shows up on good days just as much as hard ones. This can be really confusing.

You might think: “Why am I grieving when I’m coping?” or “Why does this still hurt?”

I think this is because grief isn’t a sign of failure. Or that we are weak. Grief is a sign that something mattered to us.

Chronic illness often brings what psychologists call ambiguous loss. This is a loss without a clear ending or conclusion.

It can leave a person feeling unresolved emotions or living in a state of uncertainty. There’s no single moment where you can say, ‘This is over now.’ We continually need to adapt to how we feel.”

Each flare-up, or perceived limitation, can reopen that wound because the loss is still happening.

We may experience periods of improvement and effective treatments. We start to relax and feel everything is better.

So when it seems like symptoms are returning, or we experience new symptoms, the contrast can be sharp.

While we can recognize that living with chronic illness will inevitably have ups and downs, we can also recognize that these flares do not mean we have lost any gains we have made.

Conditions like EDS and HSD do mean the body can be unpredictable. Sometimes we just don’t know how we will feel tomorrow, how much energy we will have, or whether symptoms will flare. It doesn’t mean we’ve done anything wrong,

When You Don’t Recognize Yourself Anymore: Identity Loss in EDS

Living with EDS often involves a quiet but profound loss of identity. Roles in society we may have had – parent, professional, athlete, student, carer – can become uncertain and require adjustment.

This can impact the ease of knowing who we are and where we fit. We may feel we chronic illness takes some of our identity.

Over time, though, we can discover a different kind of identity. One grounded in body awareness, self-efficacy, adaptability, and knowledge. We develop qualities that are less visible but make us incredibly strong inside.

Resilience, empathy, advocacy, and creativity are some that I can think of.

The Grief That Goes Unnamed: Understanding Disenfranchised Loss

With EDS/HSD may come disenfranchised grief. This is a type of grief that is not well understood socially. There are no cards or flowers. It can come with feelings of isolation (1).

It may sound like “but you don’t look sick,” or “you just need to rest.” Invisible illness may also equal invisible grief.

This is the quiet mourning that accompanies losses others cannot see or measure.

With EDS/HSD, that could be everyday adjustments that need to be made, plans declined, energy rationed.

Versions of our lives quietly let go without ceremony or recognition. I think because there is no one definitive moment of loss, this type of grief often goes unacknowledged, even by those experiencing it themselves.

You are allowed to grieve what chronic illness has taken, even if others cannot see it. This applies even if you are functioning and feel grateful for parts of your life. It does not need to be compared to others.

Your grief does not have to be constant, dramatic, or visible to be real. It is valid because the loss is real.

The Many Layers of Loss: What We’re Really Grieving

You may grieve:

• The spontaneity you once had, you may grieve the ability to say yes without calculating the cost.
• The career path that has changed.
• The body that now needs more care, pacing, or support.
• The version of you that didn’t have to think so hard about movement, rest, or pain.
• The relationships that shifted.
• Being understood without explaining.
• How you imagined life would be.

I know because I’ve gone through all of these at different times in my life. And I probably will continue to experience different emotions.

Movement, Grief, and Listening Differently

Tension. Fatigue. Breath that feels shallow. A nervous system that stays on guard.

This is why ‘just think positively’ has never worked for many people. We are dealing with complex conditions. If only it were so simple!

Sometimes we are scared to move because of poor exercise experiences in the past, or due to repeated injuries. Maybe it wasn’t always like this for you; you used to exercise regularly without issue, but then things changed.

But here’s what I’ve learnt along my journey: healing doesn’t come from overriding grief and ignoring it. Healing comes from meeting yourself where you are.

That’s how I ended up developing the Integral Movement Method (IMM).

Traditional exercise methods were not working for me. I needed to adapt and change to meet my needs. I found that nervous system regulation was at the heart of that.

Sometimes movement isn’t about progress; it’s about building strong foundations that give us resilience. It’s about connection and reconnection with ourselves, and maybe how we have changed. It’s about saying to your body, ‘I’m here. I’m listening.'”

Grief and Hope Can Coexist

Here’s the part that often gets missed: Grief and hope are not opposites. They can coexist.

You can mourn what has changed and build a meaningful, rich life. You can feel sadness and still experience joy, curiosity, and even strength.

You also don’t have to choose one or the other; both can happen side by side. I’ve seen this again and again, in research, in practice, and in this community.

I’ve noticed something shifts when people are given:

• Permission to move gently
• Education instead of blame
• Support instead of pressure

This shift happens not because the condition disappears, but because the relationship with the body changes. That matters more than we’re often told.

The Neuroscience of Grief: Brain-Based Tools for Coping and Resilience

I’ve asked psychotherapist Kim Clayden to share her insights on this topic. Here’s what she has to say:

Grief isn’t just an emotional state; it is a physical and neurological event. When we experience a loss of health/ability/role, our brain’s ‘threat detection’ system (amygdala) will often stay in high alert.

Here are some neuroscience-based tips to help you and your brain to process this grief and build resilience to be able to move forward in life.

Naming the loss:

Giving yourself permission to name it and feel how you are feeling. It isn’t just ‘sadness’, it is a valid response to a loss of physical certainty or even specific abilities and roles in life you had.

Research from UCLA’s Lieberman et al. (2) shows that putting your feelings into words reduces the activity in the amygdala (fight/flight) and increases activity in the prefrontal cortex (our more logical/rational thinker). This calms or tames the emotional intensity, making it feel more manageable.

Diaphragmatic Breathing:

Practising ‘bubble breathing’, such as inhaling for 4 through your nose, and soft and gently blowing out through pursed lips like you are blowing a bubble on a bubble making wand for 6-8 seconds, sends a lovely, strong signal to the brain that it is OK.

Even if you do a few of these breaths, things start to slow down, your world starts to slow down, and things can feel less overwhelming.

Chronic illness related grief can often keep us in a state of fight/flight anyhow, let alone processing grief on top of that.

Stimulating the vagus nerve via deep, slow breath triggers our parasympathetic nervous system (rest/digest), telling our brains that it is now safe to process those tricky emotions (3).

Self-compassion – the cortisol buffer (4,5):

Speaking to yourself as you would to the person who is closest to you. Just making some small conscious changes to your language, such as – “I should be doing more” to “I am doing the best I can with a body that is struggling”, or “rest is an essential part of managing my symptoms, it is OK to pause”.

Self-criticism activates the brain’s threat system. Interestingly, self-compassion practises have been shown to increase oxytocin and decrease cortisol.

Micro goal setting/Pacing practice:

Break your day up into ‘mini wins’. I stayed hydrated today! Or I managed my seated exercises today! Or I brushed my teeth today!

Grief and chronic illness can tax our executive functions of the prefrontal cortex; this can lead to more brain fog. Achieving small, manageable goals releases dopamine, which helps us to maintain our motivation.

It also helps us to maintain a sense of agency over a situation that can often feel uncontrollable.

Engagement with a Mental Health Professional:

Seeking out a therapist who understands your conditions and needs is important.

Not everyone needs support such as this; however, a good chunk of us might. I know I did when I was first starting out on my chronic illness journey. It was incredibly overwhelming with pain, fatigue, grief, appointments, specialists, etc.

It’s OK to need help. It doesn’t make us weak; it makes us stronger in the long run, helps us cope and manage better as a whole, and improves our overall well-being.

Professional support helps us to facilitate neuroplasticity. Through this guidance and support, we can learn new coping strategies and manage ourselves and our world.

We can create new neural pathways and integrate that ‘loss’ into our life story, rather than the loss remaining as an unprocessed and stuck memory, which then remains in the limbic system.

Finding Your Community: You Don’t Have to Grieve Alone

I have found that being in the presence of people who instinctively understand chronic illness grief can be profoundly relieving because it removes the need to explain yourself.

When grief is shared, the loneliness of carrying it can lessen. It can become more manageable when it is held in relationships rather than endured privately.

I say The Zebra Club is the best community in the world because of what I have witnessed within that community. People coming together to support each other, both physical and emotional realities of chronic illness are met with empathy, care, and resilience.

I also want to say that seeking support from therapists and trauma-informed professionals is not a sign of failure, but a valid part of navigating chronic illness for many people. If you feel stuck in your grief, this is a fantastic avenue to explore.

A final note

There is no set timeline, intensity, or way to grieve. Your experience is valid exactly how it is.

What you are grieving matters, even if it is invisible to others, and know that many people, including me, are walking this path alongside you.

If you are looking for a safe space where your body is understood and grief is respected, you are warmly invited to join us in The Zebra Club.

With care and compassion always.

Video: A Guided Self-Compassion Meditation

As Kim mentioned, self compassion is a wonderful practice for moving through grief. Here is a guided meditation I shared to help you practice this.

FAQ

Is grief normal with chronic illness?

Yes, grief is a completely normal and natural response to chronic illness. When you experience real losses like physical abilities, energy, and independence, grief is a healthy way your body processes those changes, not a sign of weakness.

Why does my grief keep coming back?

Chronic illness grief is cyclical because the losses are ongoing, not one-time events. Unlike grief from bereavement, there’s no clear ending or resolution. Each new symptom, flare-up, or limitation can trigger grief anew, and this pattern is completely normal.

What is disenfranchised grief?

Disenfranchised grief is loss that isn’t socially recognized or validated. With invisible conditions like EDS and hypermobility, your losses often go unseen (no cards or rituals), and you may hear “but you don’t look sick.” Your grief is real and valid regardless.

How do I cope with ongoing grief?

Coping means living alongside grief with compassion, not eliminating it. Helpful approaches include gentle movement, connecting with understanding communities, practicing self-compassion, and seeking professional support when needed.

Why do I feel like I’m losing myself with chronic illness?

Many people with hypermobility experience identity loss as physical abilities, roles, and routines change. Your identity may have been built on what your body could do (athlete, professional, active parent), and when that shifts, it’s natural to feel like you don’t recognize yourself. New identities can emerge over time, grounded in resilience, adaptability, and body awareness.

What losses do people with EDS and hypermobility grieve?

People grieve spontaneity, physical abilities (before subluxations and pain), energy levels, athletic identities, careers, independence, relationships that shifted, trust in their bodies, and trust in medical professionals after dismissal. You may also grieve the future you imagined before diagnosis and the version of yourself that didn’t fear movement.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.

Kim Clayden

Kim Clayden HPD, DSFH, MNCH (Reg), CNHC (Reg), AfSFH (Reg) is a Solution Focused Psychotherapist, Clinical Hypnotherapist & Muss Rewind Practitioner. She is a pain management specialist with lived experience in hEDS and POTS.

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