There are times when healing can feel very far away. When we’ve tried everything and then we’ve tried everything else. If you are here, please hear me when I say this doesn’t mean it’s your fault you are hurting.
We live in a society which has glorified personal power to a warped degree. It’s insinuated that if you are ill, struggling, short of money, in pain, then it’s because you haven’t tried hard enough yet.
I resist this narrative. I don’t believe it. I don’t experience it in my own life. I worry about its implications; the silent denial of all those forces impacting us like racism, sexism, ableism, class prejudice, LGBTIA+ prejudice, fat prejudice and all the other ways in which we are marginalised, judged and persecuted.
“People want a triumphant narrative. They want to know that you have solved the problem of your body. But my body is not a problem and it’s certainly not something I have solved yet.” – Roxane Gay
When I wheeled to the bus stop in my village to catch the bus to clinical placement, with the camber so steep and the street so badly maintained, it was impossible for my wheelchair to grip the pavement and so I fell into the road, in the path of an oncoming car. This isn’t inspirational.
This doesn’t make me more amazing or determined, it makes me a citizen living under policy that prioritises austerity over safety. It’s not ok. It’s not a personal challenge I’ve overcome, it’s an environmental issue that needs to change.
Today was an ‘ideal’ day is so many ways, it’s just what I’d worked towards in terms of work, appointments and fun. And it still had hard times. To me, that isn’t a failure. Dealing with the discomfort is something I’m committed to learning. As a human, I will experience these things. I don’t want to fight to try and eradicate difficulty, pain, suffering or death but to learn to live well through these and shift the injustices that make them harder than they need be.
Sometimes, after difficult health news, you feel like going back to the doctor and saying “There must have been some mistake. I am supposed to be brilliant. I have a life, I don’t have time to be sick. This wasn’t supposed to happen to me, I have other plans.”
You feel, quite frankly, done, over, finished with all this illness stuff and now the doctors can do their job, sort it out and you can get back to the thousand things you have to do, which make up your LIFE.
Looking for Miracle Cures
I spent a year looking for miracle cures. Or any cures really.
I suppose I spent a year looking for hope. Except this wasn’t hope, this was an extended form of desperation. I was trying to turn back the clock.
It was a frenzy of researching – trawling through page after page on Google, calling up obscure numbers and speaking to weird people that I hoped had the answer, or someone had passed a card to somebody saying they’d helped somebody and they were really good, as long as you paid £100 a month and bought all their supplements!
I read everything. Everything! I became what my doctors called an expert in the disease.
At the start, I read without reflection, and not from a reasonable standpoint, but compulsively. I felt I had to read every single piece of literature about the illness, every website, every source possible. Because if I didn’t, if I missed one, that could be the one with the cure.
People sent me letters with articles torn out of magazines saying perhaps I should try lymph drainage or go and see a certain practitioner. Sure, they may charge £1000 a treatment and be dubious, bet hey, it might cure me!
People just wanted to help, but at the time I knew all there was to know in the standard literature. And people ringing me up saying “it’s on the news, they’ve found what might be a cure… One day… If the clinical trials go well… If they get research funding… If it’s approved on the NHS.”
But at the start, I wasn’t cynical. I followed everything. I’ve got qualifications in a whole lot of healing modalities and if you’ve heard of it, I’ve probably tried it, yes, including wheatgrass and urine therapy (don’t ask).
After a year, no cure, and Google fatigue, I gave up. I began to believe what the literature said – that there wasn’t a cure. And that the ravaged bits of myself and my old life left around me were now my reality.
This wasn’t acceptance as such, more moving on to a more insidious form of denial.
I closed myself off from hope. I decided to try living in TV land for a while. It’s easy to get there but it’s not so easy to get out. You crawl out of bed and slump in front of the TV. That’s it. Although I can’t say I recommend it.
I left pretty quickly. Even my brain fogged mind and exhausted depression could only stand so much mindless television. (You may soon become aware that I don’t like television. You can if you want. I just can’t stand it. I think it sucks energy, creativity, and motivation and they’re ugly. When we had one I kept a yoga mat over it).
I expected there to be something that would solve everything. I thought that I could still be fixed.
I felt broken and thought I still needed fixing.
So, to put it bluntly, I had done nearly overdone denial and desperation and it was looking like I could get stuck there. But acceptance came, or rather I made a conscious effort and moved towards it.
And then one day I woke up with the realisation that somehow, quietly in the background, over minutes and hours and days and weeks and months, the pain and desperation gradually receded, and acceptance had arisen and was lighting the landscape of my life.
That maybe it wasn’t so bad, my situation. It was tough, and I wouldn’t have chosen it myself, but it was here, and actually, I could deal with it.
(At this point I hated it all so much that the idea of thinking about benefits the situation had or what it could teach me would have made me feel sick. It would have felt like cheating, or like I was opting to be ill.)
I was wholly stuck in society’s stereotype of the abject and pitiful sufferer. But I was slowly climbing out.
My life was coming back together, even growing.
I found that there were other ways to live. Not necessarily ignoring the illness and the struggles and limitations it placed on my life and my loved ones who live with it by proxy.
Neither did I have to frantically search for cures and grasp at the past in my ‘old’ life.
I could just live now. And yes there are some difficult parts, and ups and downs, ‘good days’ and ‘bad days’ and pain flares and relapses, remissions, celebrations and survival.
Truly, when I look back at my ‘old’ life I see that had its challenges and its problems too. Everyone has got something going on. I just had a name, a ‘diagnosis’ for mine.
Before I was ill I was not awake and aware in my life. Not noticing what was going on. Not identifying issues, making a change and creating the life I wanted, I stumbled and fell, through running at full tilt at I don’t know what.
Now I could identify the problems in my life. Accept that they were there, see around them, learn to work with them. To ask ‘okay, now it’s here, what am I going to do with it, about it?’
I was now alive and awake, accepting my power and my choices, standing up for my life even as I couldn’t stand in my body.
Sure I’d rather it hadn’t taken illness to do that, and if somebody had just told me all the lessons I’d learned from being ill without me having to be ill, I would listen. Really, truly I would believe them. But I know it doesn’t work like that.
I’m not saying that we’re sent illness to try to teach us things or that it’s a gift, just now that things are here, and it looks like were going to have to live with it. Then let’s make the best actually Live with it.
For me this is acceptance: stopping pushing, saying ‘okay, this is the way my world is right now. So let’s work with it and get on with it. Pass the (virgin) pitcher, darling.’
Spectrum of Acceptance
I came to acceptance after exhausting every other route.
Here’s the bad news; acceptance, unfortunately, is not like a study course. You don’t pass it, get your certificate at the end and then you’re done.
Acceptance is something that you come to and then maybe you relapse or you get a new diagnosis, or you’re suddenly forced to let go of an old dream, then your emotions throw you around the room and you feel like you’re six months back, just as angry and tearful as you ever were, and you’ve got to get to acceptance all over again.
Acceptance gets easier. Once you know what it feels like, you’ve been there, somewhere in your mind there is a map to it.
Acceptance is not a destination. It’s a practice.
Something that we practice and come back to again and again, we hold it for a while, maybe it slips away, maybe it becomes a deep part of us and then another layer comes up and we practice acceptance on that.
I believe that these strong emotions, sufferings, peace and practices, are part of being human, and I gain strength from the fact that I’ve reached acceptance from the past.
When difficult things happen, which are also new opportunities to develop and deepen my acceptance practice, I just bear in mind my long experience with navigating the spectrum of acceptance and trust I will find my way back to my centre there.
When I was finally diagnosed with my first autoimmune diagnosis, I was relieved – relieved to actually have a diagnosis. For somebody to put a name and a label on everything I was going through.
(And finally, after all the years, they did believe me.)
It was really happening, I hadn’t ‘gone crazy’ or just become really, really unfit, or whatever other fears my mind could throw up.
If it had a name, that was something to hold onto.
If it had a name, I could find out about it, and I could look for a cure and make it all go away, and get my life back.
At the same time as this, I was desperately embarrassed, really so ashamed, I felt like it was my fault, and that I was weak or had failed in some way. That I had done something wrong somehow, by getting ill. And that people would be angry at me for it. Or too worried and try and take more of my life away. The shame/blame game played out strongly and at the time I didn’t have the tools to handle or escape it.
I really really wanted the illness not to be true. I really, really wanted to just ignore it. Denial deepened.
I wanted not look at the diagnosis, the reality, the pain. I wanted to pull my life around and try and make it less of a factor. Never mention it. Change my hobbies and pretend it was from choice, and never ever say, not even whisper, that I was now far, far too sick to do the things I so desperately loved. Oh, adulting challenges.
You may have wanted this too, or you may have had one of a thousand other different reactions and that is ok.
We feel that something horrible has come into our lives, and we can’t instantly change it.
But we want so, so hard for this not to be happening to us.
Desperate with toe curling, tear streaming, muscles clenched, shouting, impotent fury and pleading for this not to be real and not to be happening to me, because I’m a good person, and I’ve got a life to lead and I don’t know how to handle this and I need to be okay.
The thing is, ignoring it doesn’t work… I was building my life around a pretence, I was not taking care of myself because I was too busy trying to pretend that I wasn’t sick and I got ever, ever so much sicker. Dangerously so.
But I found my way, and that’s what Trailblazing Wellness is about, it’s not to tell you my way – it’s to give you options and to help you find yours.
To get started, download my free guide on Turning Trailblazer below…
“Another wasted Sunday… Realise, as the long hot days freakishly repeat themselves, one after the other, that whatever I am doing I really think I ought to be doing something else…
The more the sun shines the more obvious it seems that others are making fuller, better use of it elsewhere: possibly at some giant softball game to which everyone is invited except me; possibly alone with their lover in a rustic glade by waterfalls where Bambis graze, or at some large public celebratory event, probably including the Queen Mother and one or more of the football tenors, to mark the exquisite summer which I am failing to get the best out of.”
– Bridget Jones Diary
The summertime is often portrayed as the best time of year, the time to which everyone looks forward.
But what if you don’t fit into that category, for whatever reason?
It may be that you just prefer the winter months, or it may be that certain difficulties come with the intensity of summer.
Perhaps it’s frustrating seeing how bright and warm it is if you’re not able to go outside as often as you’d like, or at all, especially if you are living with chronic illness, caring responsibilities or mental health challenges.
It can sometimes feel like there’s a pressure to be outside and to enjoy the weather (how many times have you heard the phrase “enjoy it while it’s here”?).
But there are a few things you can do that might make those difficulties a little easier. Planning for summer now can make all the difference later.
1. What’s YOUR reality?
Firstly, acknowledging that you find aspects of summer hard might help. It won’t necessarily make you enjoy the time more, but it can at least take some of the pressure off, knowing that you don’t HAVE to enjoy it. It’s easy to fall into thinking that we shouldn’t feel like this, but we’ve had some words to say about ‘should’s before.
2. Prepare for Clear Skies
You know the heat makes things harder, so plan ahead and prepare to make things easier when the temperatures soar. Think about the tasks you need to do every day and how heat makes them harder. Setting up options in advance is doing your future self a favour. Can you freeze meals in advance? Get a chillow or fan ready? Discuss a flexible work schedule with your colleagues? Get organised get your cool ducks in a row.
I was seventeen when I was first invited to a dinner party. My first, real, grown-up party! I got all dressed up. Hair. Make-up. The excitement was palpable. Good friends, food and fun times – this was living!
I made it to the soiree, elated and expectant…but fell asleep at table. Weakened by just getting to the party, once I actually arrived, I simply collapsed and passed out with exhaustion.
It was the first of many disheartening occasions where my chronic illness dampened the festivities.
I love birthdays, milestones and celebrations. Parties are amazing opportunities to bask in joy and happiness – but they frequently bring up huge challenges, especially for those in pain or with illness. Travel. Unsuitable food. Emotional or physical overwhelm. Over-stimulation. Navigating expectations. Awkward questions. And, for those of us with mobility aids, new or inaccessible environments. With pain or without, parties present unique issues. But with forethought and savvy planning, they can still be managed and – even more importantly – enjoyed.
Planning may seem to undermine the fun and spontaneity inherent in happy occasions. It may even seem boring and unfair when it appears not everyone must go to the same lengths to achieve the same outcome. But in truth, everyone plans how they’ll navigate a party in some way, shape or form: people work out what to wear, what gift to buy, what food to bring, how to avoid traffic (and that obnoxious aunt or ex!)
Most people don’t consciously acknowledge that it’s actually “planning.” When planning how to manage a party so we can enjoy it with illness, pain or grief, we’re prepping just as everyone does, just more deliberately.
Some of the best ways to release the pressure and cope, energetically and emotionally, are some of the simplest:
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It is not a substitute for working with a doctor, registered psychologist or other professional. I cannot guarantee the outcome of following the recommendations provided and my statements about the potential outcome are expressions of opinion only. I make no guarantees about the information and recommendations provided herein.
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