The Grief of Not Fully Participating in Your Own Life
The first activity that my hubby (then boyfriend) invited me to, was a bush walk in the blue mountains, I was 25, I had no idea that I had lipoedema or that it was even a thing. I really wanted to go, but I already knew I would struggle so much that I wasn’t going to do the actual walk. So, I made the excuse, "bushwalking wasn't my thing" and that I would read my book while they did the circuit and meet me at the end.
I didn't understand it then, but I felt ashamed. I felt like I was faking intellect, to cover up the fact I was just lazy and unfit and thats why I struggled that much, and was acting like its "not my thing". But, really, I wasn't sitting there reading my book happily. I was yo-yoing in my head that I should have just gone or I should just work out more, but also, I hated being in pain after working out. I felt miserable, yet I faked a smile when they returned, and talked about how good my book was.
There are many quiet unacknowledged forms of grief that we experience when we have lipoedema.
Not being able to fully participate leaves you on the sidelines of your own life. You watch others fully engaging and seeming so happy, you watch friends play soccer together, chase kids around, watch those girls in shorts jogging in the morning with their dog, like some kind of perfect sportswear commercial.
You either decline things, or you struggle through, suffering either then, and/or for days after. You worry about where you can sit, and what you are going to be able to wear even. And often, you come home feeling guilty that you really didn't enjoy it. Your world can often feel smaller than you imagined it would,
Grieving the Life You Thought You Would Have
At 25 I didn't realise I was grieving, I was too busy hiding grief with shame and blame. But as time went on and I learnt about Lipoedema and that I had it, I started to recognise the grief.
And I recognised how invalidated I felt around it all.
To be clear, the invalidation mostly came from myself. I would say things like "well, its not cancer", "so what you can’t wear shorts" "it doesn't matter that you can’t join your sporty friends in their morning runs, you get to sleep in".
But, there can be a very painful gap between the life you imagined and the reality you are now trying to navigate. That gap often carries grief.
Im not saying that life is meaningless or hopeless, I'm not over here throwing a pity party, but the repeated limitations can create an ongoing sense of loss, and that loss that rarely receives acknowledgment, often from ourselves.
I know what it is to compare suffering, its something I would constantly do to myself, and I thought it was healthy, to remind myself that others have it worse, but realistically, comparative suffering only makes us feel invalidated and suffer alone. check out what the incredible Brene Brown says about it here
Grief does not disappear simply because somebody else may have it harder.
The Emotional Weight of Missing Out (pun intended)
It’s not fomo (fear of missing out)
It’s Ewomo? (Emotional weight of missing out) ok enough lame jokes..
I don’t know about you, but I get so sick of thinking about Lipoedema.
Compression, dry brushing, anti inflammatory, bruising, swelling, bla bla bla. Sometimes I just don’t want to think about it anymore. I get tired of explaining it, explaining myself, explaining why certain things are harder, especially in social settings. But just because you stop talking about it all the time doesn’t mean you stop living it.
A lot of people living with Lipoedema become incredibly skilled at appearing fine externally while privately carrying huge amounts of physical and emotional exhaustion. You see them smiling through events, but mentally they are already calculating how long recovery is going to take afterwards. Sitting uncomfortably on hard chairs through dinners while hyperaware of the food being served, the swelling and fatigue that will follow, whether they look uncomfortable, whether people are judging their body, whether they should have just stayed home.
A lot of people push through activities because they don’t want to disappoint others or become “the difficult one” who always says no. It’s not only the physical difficulties themselves, it’s the amount of mental energy required simply to participate
Over time, that becomes exhausting. So sometimes people slowly stop attending things altogether because the emotional exhaustion surrounding participation becomes too heavy. Others continue showing up physically while feeling emotionally checked out because so much energy is going into managing discomfort, anxiety, pain, or self consciousness. That kind of exhaustion can become deeply isolating.
Especially when other people only see the cancellation, not the grief sitting underneath it.
Watching Other People Move Through Life More Easily
I took my mother in law to the zoo one day while she was visiting. We walked around all day and by the end of it I felt absolutely drained. There came a point where we had the option to either stand in line for the gondola back to the entrance or walk the whole way back ourselves. We were all tired, so we decided to wait. But while we stood there in line, I could feel my legs starting to rage at me.
I remember becoming almost desperate trying to relieve the pain. Squatting down. Leaning on things. Shifting side to side. Shaking my legs out. At the time I was probably around 30, and my mother in law was in her late 50s. I remember stopping and looking at her and asking, “aren’t your legs killing you?” she replied, “no, not really, my feet are a little sore.”
I felt like crying.
Not because she had done anything wrong, but because it hit me that this was not normal. That other people were not constantly fighting their body the way I was.
Moments like that can be really painful, watching other people comfortably walk around all day on holidays while you are already thinking about swelling and pain before breakfast. Watching friends throw bikinis on without spiralling first about their body. Watching people say yes to spontaneous plans without mentally calculating recovery time afterwards. Watching people simply exist in their body without constantly monitoring it.
And that can bring up a really complicated mix of emotions.
Sadness.
Envy.
Grief.
Resentment.
Shame.
And then often guilt for even feeling those things at all, because a lot of people with chronic illness are deeply empathetic people. They understand pain, so the last thing they want is to sound bitter, negative, dramatic, or ungrateful. So instead, they quietly suppress huge amounts of grief and try to talk themselves out of it.
But acknowledging grief does not make somebody ungrateful.
It makes them human.
Grief Around Identity
Who somebody is, vs who they want to be, vs who they could have been. That can ache just as much as our body. Because the limitations, the pain, the swelling, the exhaustion, often do not feel aligned with who somebody knows they are underneath all of it.
Underneath the Lipoedema can be a girl who hikes mountains. A girl who surfs, who runs, who feels free in her body. But realistically, she is sitting in compression pants trying to manage symptoms, exhaustion, appointments, and pain instead.
And that disconnect can create enormous grief.
A dear friend and fellow lippy sister, Meegan, does walking marathons. This girl is strong. She has muscle underneath her pain. She fights so much harder than most people will ever realise just to do the same things others take for granted.
And I think of who somebody could have become without Lipoedema constantly fighting against their body. The athlete. The adventurer. The version of themselves that existed without limitations constantly shaping decisions.
People often underestimate how deeply chronic illness affects identity. When somebody spends years adapting around pain, fatigue, shame, swelling, limitations, or self consciousness, it slowly changes the way they experience themselves. Sometimes they stop recognising themselves properly. Sometimes they stop trusting their body. Sometimes they stop dreaming as big because reality keeps forcing negotiation with limitations first.
That grief deserves compassion too.
Because identity loss is still loss.
Carrying Invisible Grief
There is no memorial service for all the above grief.
No socially recognised mourning period where we all wear black.
No assigned date where everybody acknowledges the loss openly.
Instead, the grief accumulates quietly.
Through missed experiences. plans being cancelled or not made. Body shame. Fatigue.
Disappointment. Isolation. Watching life feel harder than expected.
And because these losses are ongoing rather than singular, many people never fully allow themselves to grieve them honestly.
They minimise them instead.
But suppressed grief does not disappear. It often turns into exhaustion, numbness, resentment, anxiety, or shame.
Making Space for Grief Without Losing Yourself to It
So, just a reminder, this isn't a pity party that I am inviting you to. You may or may not resonate with any of what was written.
The purpose of this, was to give a tiny space out there, for women who might feel like this, to have a moment of acknowledgement. Not just the struggle and pain and grief, but the strength you all carry.
Some people have expressed fear that if they really let themselves feel it, they will spiral, or feel guilt, or feel selfish, or feel bitterness. But acknowledging grief, doesn't mean you will fall apart, or that you are selfish, or that it will be a cure. It simply means recognising that chronic illness can carry very real emotional losses, and those losses deserve compassion instead of constant dismissal.
Acknowledging all of this can be like plonking down into a comfy chair (after waiting in line at the zoo all day) that you can relax in to, to sink your weariness in to, until you feel strong enough to continue on.
I know you have been doing it tough on your own, but you don't have to.
If this article felt familiar, you don’t have to navigate it alone. I offer counselling for people living with lipoedema and chronic illness across Australia.
Learn more about my Lipoedema Counselling service
There is a comfy chair with your name on it.
Jes xxx
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