Living With Chronic Illness: Your Worth Isn’t Dependent On What You Do
I recently spent 4 weeks in hospital. This morning, lying in bed, in severe pain and unable to move, I had a strange feeling of missing hospital. Not the noisy and un-restful clinical environment that being in hospital provides, but the being able to press a buzzer and get pain relief or water or whatever I needed brought to me. I missed having people nearby to look after me who are there to do just that, rather than friends I need to ask favours of.
I have lots of people offering their support, but asking for help is still really, really, hard. Sometimes I am good at it, but other times - like during this current stint of illness - it’s been incredibly difficult. When I feel at my most raw and vulnerable, when I’m in the most pain and unable to do the basics I need to do in order to survive (making food, shopping, etc), asking for help is the hardest.
The fragility and vulnerability of being in so much pain you can’t move is scary - I feel a lot more alone than when I was in hospital. Despite having amazing friends around me, it is the moments like this - the morning after the night before - that are the most lonely and vulnerable.
Last night I did more than I had done in ages (I’m not even talking that much - I picked berries from the garden and walked up and down the stairs a few too many times - I didn’t pull an all-nighter or cycle to France) but I woke up feeling as though someone was ripping my ribs apart and I was unable to do anything about it, or get up and get what I needed.
These are the moments - the crashes - I want to share with friends and people who love me, but are the moments that are the hardest to articulate or let people in when I’m experiencing them. Partly because often words don’t touch it, but also because it involves showing someone my unedited ‘messy’.
It involves exposing my tender points, my embarrassment, my shame - it involves being vulnerable. Lifting off the veil of ability I often wear, and saying “I can’t do this, I need your help”, is so hard. I am good at being vulnerable in some areas of my life but when it comes to illness, I frequently squirm and change the subject, or joke about it.
Being so frequently floored by illness is something that, despite part of me knowing that it’s not my fault - it’s life, it has nothing to do with whether I am lovable or not, or whether I could have done something to prevent it - I still feel deep shame, embarrassment, self-criticism, and discomfort about it. Part of me feels as though I have failed - at life and at being able to look after myself. Especially when I need help with the basics.
When spending time with friends, I might share a bit of my experience - I explain that I am in pain or feel really ill - but I never say as much as I need to, and rarely do I allow myself to be exactly as I need to physically. I will lie on the sofa, but only when I feel as though I will pass out if I don’t. I will generally push on through, battling hardcore symptoms whilst I smile and do things, and wait until friends leave or I walk home, until I fall onto my bed in a teary, exhausted, hurting, and frustrated-with-myself, heap.
Sometimes this distraction is medicine - it is a welcome break from the intensity of my experience - but other times, I feel lonely and sad. I feel that familiar heartbreaking feeling of not feeling completely seen, known, or understood, by people I’m closest to. It isn’t their fault, it is just one of the extremely common, painful, and frustrating aspect, of longterm illness - that so much of it goes on ‘behind the scenes’.
It is as though my illness happens privately and what other people see is only half of me. The half of me that people see - the happy, bright, and smiling me - is still very much me, but it isn’t the whole me. It isn’t necessarily what I am feeling at the time. Sometimes it is, but when I’m feeling really ill, I wear the Seeming Okay mask, because without it I fear crumbling. I feel scared of being and feeling that vulnerable and exposed.
The mask becomes a lifeline in an exhausting slog of simply functioning or interacting with people. But it also bites me on the ass when I want to feel seen, heard, and understood. It masks connection.
It saddens me and it also frustrates the hell out of me. Shame and self-criticism is what keeps me silent and squirming. This shame and self-criticism comes from what society has told me I should be doing or achieving in order to have “succeeded”, and ultimately to be accepted and loved.
Chronic health issues have left my life looking very different to what I thought it would look like, and me feeling very different to how I thought I would, but none of it is ‘wrong’. It might be really tough to deal with but absolutely none of it is me ‘failing’. If anything it is the opposite: it is me surviving.
Your worth isn’t dependent on what you do, it is dependent on how you are. There are no ‘right’ or ‘wrong’ ways to live, despite society often telling us so - all we have is what is, and how we handle and cope with it.
Shame will always be there, but it doesn’t need to define our experience. Go share with people you trust who have had similar experiences, or people who can have compassion even if they haven’t. This has become my medicine, because the shame softens - even if only for that moment.
Published on Huffington Post, Films For Action, & The Mighty.
I see you’re here and you’ve been here for a while — a long while, in fact — but I’m over you, now. I’ve been over you since you first stumbled into my life, but something’s different now. You’re still the same, but my relationship with you has changed.
I’m learning to meet you where you need to be met, rather than doing everything I can to avoid or ignore you, to resist the messages you’re trying to pass to me, through my body, or to try and translate them into messages I want to hear rather than the ones you’re actually sending.
I’m learning not to fight you, anymore — not to hustle and grind with adrenaline, but instead to breathe deep and then stop. Even if that stop is longer than I might want it to be — months, rather than moments.
I’m beginning to finish your sentences — sometimes before you’ve even started speaking them.
I look after myself differently, now, you see.
I love myself.
I mother myself. When I hold myself, I know, for the first time in my life, that I’m never letting go.
I look in the mirror and I tell myself all the things I so desperately needed, and wanted, to hear as a kid. And the things I so desperately need to hear, now. I know how to give — and am giving — the kindness or gentleness to myself that I’ve always needed.
Each day, my own tenderness, warmth, and affection, leaves me teary.
I’m coming home.
And on days in which I can’t find the connection, the warmth, the mothering, or the part of me that doesn’t want to find these things has taken the reigns, I know that by the end of the day, I always want to come home again.
Those days of disconnection or neglect don’t last as long, anymore. And they’re never as intense or destructive as they used to be.
I’m learning and listening to the language of my body, with a beautiful intimacy that’s only growing deeper and more loving.
I’m falling in love with myself and finding myself, and the more I do, the less I want to abandon myself or my needs.
For all these reasons, I know I don’t need you anymore.
I don’t need you to remind me to do all of this loving and mothering of myself. I don’t need your presence be the reason that I take it easy, rest and nap, drink herbs, be gentle with myself, eat well, because I’ll do those things out of love for myself, not just to ease the weight of you.
I used to ask you to leave me alone every day, sometimes every hour. I asked, I cried, from the depths of my being, for you to give me space and allow myself to feel, and find, myself again.
It was a desperate longing and ache for the air I breathe to be air of vitality, health, and wellness, not one of fatigue, pain, or a flu-like malaise. To be able to step outside into the life that surrounds me, and connect with the life that I have inside of me.
I still often feel these things, but I’m asking now, from a place that isn’t so desperate. It’s simply a solid need for distance from you, and a solid knowing that it is possible.
For the first time in a long time, I can see what health looks like. And for short moments, I actually feel it, too. These moments aren’t long, but they’ve begun to be here. It’s a health that’s come from within, regardless of symptoms or physical experience. I’ve felt healthy with you here.
I’m still struggling with various physical things, but the sense that health — health without you — is on my horizon, is something I’m beginning to know and trust, not just hope or wonder whether it will be.
I’ve learnt to enjoy your company. I haven’t chosen our friendship, and I still wouldn’t choose it, but I’m learning to revel in the coziness that you bring, rather than feeling a tumbleweed of worry, hatred, anger and frustration, towards you.
I read, I write, I nap, I lie on the grass with you. I take you and my body into bed, and give myself the rest I so deserve and need. I tuck my inner girl inside my duvet and hold her.
I allow her gratitude, sense of safety, warmth, and relief, float up and embrace me, reminding me that I’m doing the right thing.
I lie for hours beneath the Spring sun, allowing my teen to feel the freedom, nourishment, and adventure she needs.
I still feel all the same feelings towards you — grief, sorrow, hatred, anger, a sense of injustice and frustration — but I understand you more, now. I don’t feel as lost. I’m not desperately looking for something or someone to fix it, fix you, fix me.
It makes sense that you’re here. It’s shit in so many ways, but it makes sense.
It made sense when you first showed up, but I couldn’t see that — I refused to. All I saw and heard was fear and a No that rose up from inside myself, and stayed.
Suddenly, I now tell myself all the reasons why you’re here, and all the things people used to tell me, upon hearing that I’m hanging out with you, and upon hearing my story.
Of course you’re going to need this time of rest. You deserve, and need, this time out. And you’ve got time — so much time. It’s okay to need this now — it’s not forever.
I’m able to see further down the line than just now. For a while now, I’ve been able to know and trust that if I give myself this time with you, one day you and I will be distant strangers that occasionally pass each other in the park.
Or you’ll come back to visit for a holiday when things get to be a bit too much. I know you won’t disappear forever, but that’s okay. I’ll need you sometimes.
The thing is, I want this time of distancing, to be now. I need to feel independent from you, and most importantly, I need to feel myself. I need to go on dates with Vitality, and have naked morning cuddles with Energy. I need to write poetry with Freedom and sing rap songs with Life.
I need to look in the mirror and know that the face of wellness that and everybody else (including me) sees, is the body I also feel.
I can thrive with you here, because that’s what I’ve learned to do — and thriving amongst pain or hardship is something I’m really fucking good at — but I don’t want to need to be good at this, anymore.
I want to thrive without you here, and I want to hear my heart singing as I live the life I want to, rather than the life your presence prescribes.
Be well, Tired.
Previously published on Rebelle Society
my heart brings me up off the floor
Over the last eight years, I’ve danced with the act of making myself sick — I’ve danced with Bulimia.
I hate labels but, on paper, I guess that’s what it is.
During peak hangouts with this vile thing, it would happen at least three times a day — I was lost in a whirlwind of consumption and release.
But during quieter times, it’s been just a few times a year — feelings of desperateness and disgust flooding my system, leaving the fridge and the bathroom as, seemingly, the only logical places to go.
I lean over the toilet, elbows on the edge, fingers in my mouth. My teeth jar against the skin of my knuckles, bits breaking open. My back reaches upwards, and sinks downwards. My throat heaves open, aching. The roof of my mouth stings, burning. My stomach holds on, turning.
My heart longs for me to stop but my head eggs me on.
As I write this, I can’t believe I’ve done this — and sometimes do it — to myself.
It’s such a paradoxical experience — the thought of making myself sick leaves half of me craving and the other half of meshivering. I’m mixed with anger and frustration that I choose not to use it to cope as much as I used to, and utter relief and gratitude that I don’t.
I’ve found other ways to deal with moments of overwhelming isolation, helplessness, and pain.
Making myself sick can so easily feel like an act of love — I’m offering myself a way of coping. It’s a chance to revisit the safe, but agonizingly painful, place I knew for so long. I’m offering my inner rage and whirling hatred, the gift of release. It’s a chance to cover my crippling worries with a blanket of escape.
It’s an opportunity to numb the desperate grief for my un-mothered childhood, and the deep longing for a mum I have now. I’m offering myself some time off from the work of cultivating self-love and self-compassion I’ve been so dedicated to doing.
When the tsunami of excruciating feelings, and the team of self-hating gremlins, feel impossible to mindfully notice, I can give myself this gift — the gift of making myself sick.
The rush of adrenaline that comes from the process is huge — it’s an addiction. I’ve never gotten into drugs, but this feels like my shot of heroin, my spoon of crack.
It’s my hit of B.
When I use it, revisit it, after not doing it for a long time, I feel like I’ve come home. I’ve got my shit together. I can cope. In a storm of feeling painfully lost and isolated, I feel like things are going to be okay.
I feel frustrated that I hadn’t done it sooner.
But I feel so so alone — so much more alone than I did beforehand.
Despite the sales pitch my mind can so easily and effectively give, seconds after I stop, everything feels so much more complex than it did before. The idea that it was a gift to myself goes out the window.
I freak out because I know the revisiting of this old act isn’t okay.
The come-down — the waves of shame, regret, self-disgust, embarrassment, fear, a longing for things to be different, and a desperate need for help — suddenly flood my system. I wonder whether it’s really worth the heartbreak.
What always brings the spell of kneeling-beside-the-toilet to an end is my heart bursting open and my tears filling buckets. I suddenly stop because I hear my heart telling me I deserve more.
I stop because I begin to listen — my heart’s voice is no longer drowned out with adrenaline.
My heart brings me back up, off the floor.
During the half hour leading up to the last relapse, my inner girl sat in shock and fear as she witnessed what was happening. She was about to be wounded and she could see it coming.
She watched in terror as the adrenaline flooded my system and rid me of any clear and rational thoughts. The B-Gremlins were more convincing than thought or feeling of self-love.
The part of me that seemingly needed this act of self-destruct had a tighter hold than the part of me offering gentleness, compassion, or kindness.
I thought my journey with B was over a couple of years ago, but last year I took myself by surprise and did it twice. Then two months ago, I did it every day for a week.
It turns out that my journey with B isn’t over, and it probably never will be, completely. It will always be there as an option, because I’ve done it before.
That’s enough to make me never do it again, but it’s also enough for me to have it stashed in my cupboard of comfort as a resource I can head back to when I can’t find, face, or be fucked with, mindfulness, love or compassion.
It just depends on the moment — on where I’m at, how I’m feeling supported (internally and externally), how loudly the self-destructive gremlins are yelling, how strongly my self-hatred has a hold, and how deeply I trust and believe the voices telling me that I deserve things to be different.
I feel embarrassed that it’s something I deal with, and I long for it to be something I can sweep under the carpet. But beneath the embarrassment, is a compassion, an understanding, and a relief, that I let it speak.
My journey with B, is just like my journey with my wounding: complex and confusing, but able to be healed and forgiven.
Originally published on Rebelle Society.
the relentlessness of chronic fatigue: why we are brave to keep resting
For the last 10 years, I have had something intense going on with my body: injuries, viruses, infections, extreme fatigue, severe pain, etc.
I’ve received the diagnoses of Post-Viral Fatigue and Chronic Fatigue on various occasions, but I believe these to be labels for lots of different things all going on at once.
I’ve been lying here trying to find words to describe my experience, but doing so is really fucking difficult. Instead, I wish I could give someone a day in the body of Amani token when they ask me what I feel like every day. Or let friends step into a Symptoms Simulator when they ask me how I am in that moment.
But unfortunately neither of those things exists, so using words it is.
It is shit. Really shit. There are benefits, of course there are — increased sensitivity in my body, for example. I am so much more aware of my body’s needs and reactions to things than ever before, and only seem to get more so.
But fuck the benefits right now — I wanna look at and voice what is hard, what is relentless, what drains me every day, and leaves me wondering whether I want to be alive if this is what is happening in my body and mind constantly.
On days/weeks like this, finding the positives, feeling the empowerment and self-connection that comes from it, feels like bullshit. And sometimes, it is. All I can see is overwhelm, pain, exhaustion, and fear. So much fear.
And I believe in the therapeutic power of ranting, moaning, and indulging in feeling sorry for yourself when something is difficult — when I do, the feelings pass. When I don’t, and desperately try to be alright or positive, they linger, and trip me up or kick me sideways, leaving me ass-over-tit.
It is a minefield. A hotpot of symptoms, with my body being the bread that’s dunked in it. Mine changes daily, hourly, and often on a momentary basis. One minute I will have energy, the next my muscles have completely emptied. Or the other way round.
There are the usual characters of fatigue, pain, and fogginess, along with other regular symptoms. They each have their usual spots they linger or ways they show up in my system, but even these familiar characters vary in their disguises, intensities, and locations.
Fatigue, pain, and fogginess, have become blanket terms for some feelings, but are a lot more complex, confusing, and varied. “I’m really tired” could mean thirty different types of experience for me.
Different dots on my pain subway show up every day, keeping me on my toes, sometimes literally.
Some moments the pain-train hits all stops at once, and I hurt everywhere. Other times it is stopped at just eight or nine stops all at once and I only hurt there, all in slightly varying ways or intensities. Some places it is a deep ache or throb, and other times or places it is an acute stabbing.
The word fogginess feels like the understatement of the century. If a black, thick, and heavy fog, that not even having cat’s eyes spread throughout the middle of it would mean you could drive in it, counts, then it is the appropriate word to use.
No wonder I rarely feel present to what or who is around me, or like myself when that is happening inside my head…
It is hard to feel positive when this is happening. I feel helpless, lost, scared, alone, and confused. Often all I can do is dissociate from my body in order to do something distracting, only to crash ten minutes, a few hours, or a day later.
It doesn’t matter if I do something nourishingly distracting or destructively distracting, I still crash… I just might have happier memories to keep with me whilst I’m crashing if I did something nourishing.
Other times when I feel too ill to move or function at all, I numb myself with Facebook or Netflix or something else. I do this a lot,but in moments I feel I’m going to break from the intensity of my experience, this feels like all I can do.
Even when doing this, the symptoms and the emotional pain are still there. Somehow just having distraction away from the intensity and feeling slightly numb makes it more manageable, but doing so hurts my heart during and after.
I feel scared of the intensity of my experience, but I also feel scared of the unknown, the future down the road. I feel scared of what will happen later on if I feel this ill now — the ironic and hilarious quality of anxiety that stops me from resting and takes me out of my present and into a future that doesn’t matter right now.
But that’s the thing, it does matter when I’m holding hands with anxiety — all the uncertainties in my life come flooding forward, and sit on my face, leaving me unable to see anything else.
Pain, fatigue, and other symptoms trigger a panic response in me that I end up feeling frozen in. I get stuck in a cycle of symptoms and fear, and awareness of this cycle only perpetuates it.
Earlier it took me three hours to walk a route that usually takes 20 minutes because I was so fucking exhausted and sore that I had to keep lying down for rests in the grass.
I feel like a shadow of the person I used to be, and this breaks my heart often, but if I see myself and my life through a more compassionate lens, I see the brilliance and honest truth that I am, even when I feel the furthest from it.
My physical or emotional experience isn’t who I am, and it isn’t who you are either.
It is part of my experience, and it is part of yours, but it will never be your whole.
Previously published on Rebelle Society.
mind & body
The mind-body connection is something that used to leave me baffled.
Now, rather than baffle, it blows me away. The way our mind and body dance together, each one impacting the other so intricately.
When I began to develop chronic fatigue in 2008, the mind-body connection was a term thrown around by people in relation to the healing process I would be embarking upon. It was something I supposedly needed to discover and explore…something that would apparently come to me as I began to heal.
But it wasn’t like I didn’t have a mind-body connection, I just had one that consisted of abuse and neglect—something I regularly experienced and witnessed as a kid. My connection involved my mind yelling demands and criticisms at my body, and my body trying desperately to perform.
What felt like rebellions from my body would quickly follow. I’d end up energetically and emotionally empty. I now see these rebellions were simply moments when my body was telling me she could no longer be ignored. She was fucking knackered and couldn’t trek on in the way we had been anymore.
Coffee and a critical tone just wouldn’t cut it.
I was beginning to listen to my body—I couldn’t not—but what I was hearing was a language I couldn’t yet speak. One of gentleness, love, and support.
I was terrified.
I was terrified of what my body was saying it needed, and I was terrified of just how awful I felt. I was terrified by the fact that what I knew as my body was rapidly disappearing.
And I refused to accept it.
I desperately searched for the energetic, vibrant, and booming-with-sporting-promise girl I had always been, but I could only ever hold onto her for a brief moment. A deeper hatred for myself began to develop—one born out of frustration, fear and disgust.
My body and my mind continued in opposite directions along the Highway of Disconnect, whizzing back and forth, throwing U-turns and having frequent head-on collisions.
I could literally feel the mind-body blockage I had. It was in my neck. I was a head and a body, with a neck that tried to mediate but instead just joined with knots of discomfort.
Any attempt at connection—yoga, meditation, body therapy—became unbearably stressful. It shone a light on these knots and my inner chaos. Mustering up a desire to be in my body was pretty impossible too—why the FUCK would I want to be IN my body when my body felt like crap?
Eventually though, the blockage in my neck did begin to slightly shift, and the introduction to a totally different mind-body connection headed my way. Cranio-sacral therapy, mindfulness, somatic experiencing therapy, Scaravelli yoga, herbalism and time, were—and continue to be—the main helping hands.
The sense of feeling blocked certainly hasn’t disappeared, but it feels overwhelmingly different. It has reduced enough for love letters to be passed through, from my head to my toes. Things feel more fluid, and I feel more whole. When I feel like a wandering head away from its roots, it just takes breath to bring me home.
I can listen to the body beneath the brain. I ask sensations or symptoms what they’re here to tell me. I try to notice where my feelings are in my body rather than letting them take the reigns in my mind. I give them—the feelings and sensations—permission to move if they want to.
My breath is my Home Base that I regularly head to for time-out. I have discovered that the key to unlocking my chest of self-compassion within is rather than run the other direction, sit in my body when things feel like crap and are uncomfortable.
I witness instead of being all consumed.
I have a beautiful cushion inside of myself where I can do this. Sure, a lot of the time it feels like I’m sitting butt-naked in the middle of a hailstorm, or I AM the hailstorm, but something is very different from how it used to be.
Being mindful and being in my body is becoming second nature.
I am still a full-time student in the class of my body’s language, and I hope I always will be. But I also hope the lessons get a little easier…
While chronic fatigue is a label I often use to describe what’s happening, or to tell the story of where I’ve travelled from, I don’t like it. I don’t see myself as ill, and I never have. I see myself as someone with a body who’s just working a few things out, and who—underneath this—is booming with health and promise.
I am learning to trust that my body knows what she’s doing.
I am listening.
Originally published on elephant journal.