“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
~ Susan Sontag, Illness as Metaphor
I’ve been unwell since my teens.
There have been so many diagnoses. (I won’t list them all here, although perhaps I should.)
I’ve pursued so many kinds of treatments. (Really. In over thirty years of continuous concerted effort I’ve done more kinds of diets, therapies, herbals, treatments, drugs and totally-out-there-hokey-but-I’m-doing-it-because-desperate regimes than I care to mention. Hundreds of thousands of dollars worth. And I’m still here. So some of it must have worked.)
There have been times where I have only been able to see myself through the prism of loss.
But that’s soul-destroying. It makes you die while you are still alive. And I want to live. So mostly I choose to view my life by framing it up around what I can do, rather than what I can’t.
I have read deeply and widely, in order to get an inside angle on my health. I have come to understand my body better. I have become a master at hiding or managing disability and at creating a life that works on my terms. Mostly.
Some days a pain comes. Or some other symptom. After which I spend hours backtracking and investigating. Was it because of something I ate? A chemical? Lack of sleep? A million other possibilities? Did I do this to myself or make things worse? I’ve lost days to this kind of hypervigilance. It never helps, although it can gift me a temporary illusion of control.
I have a long, long list every single day – of pains and problems and freakish symptoms which it long ago became too boring to mention, even to myself. Mostly it is background noise in my life. I live with pain. I live with the kind of things that would have other folk rushing off to the doctor. After a lifetime of discussing them with doctors and having no resolution these kinds of things become your new normal, and then, eventually, just part of your life.
Mostly, just like other people with chronic or terminal illnesses, I have continued to look quite unremarkable on the outside. Maybe just a bit tired sometimes, or a bit puffy or drawn or pale.
These days I’m actually doing much better. Especially after two solid years of horrendous antibiotic therapy for Lyme. After major surgery last year ( and then the superbug I acquired) and an avalanche of new drugs (and some old favourites) and then Chinese herbs, essential oils, modified diet (again!) and intravenous vitamin C.
I feel like I’ve turned a corner. I can function better, I have more energy than I’ve had in years. Life is opening out a little more for me. People comment on how well I look.
Although that better is comparative.
I still can’t drive. My vision is still impaired. I still need early nights and nana naps to get through the day. I have a horrible startle reflex. When I’m tired. I lose words. I sound like. A badly. Edited film. With pauses and breaks in. All the wrong places. Because. Brain not working properly.
I’m still immuno-compromised. (And please, will you quit rolling your eyes and commenting about how it always seems to be one thing after another with me? Yes, that’s true. Because I am immuno-compromised after so many decades of illness. The bugs that barely register with you or that inconvenience you for a few days still have the power to take me down, or even out. Don’t visit me when you’re sick. Wash your hands more. Practice good hygiene. Rant over.) Incontinence issues? Yep. Not quite nailed the superbug? Yep. Foods that send me spiralling into misery? Yep. Exhaustion? Yep. Pain that wakes me up and keeps me up? Yep. No libido? Yep. Tendon stiffness that sees me hobble when I get out of bed, or up off a chair after sitting for a while? Yep. Pay for increased activity levels with increased night-time pain and exhaustion the next day? Yep.
Yep.
Still, I have coping strategies, and meditation, and healing foods and emergency triage treatments. I have a wonderful local GP and acupuncturist. I have an incredible husband who is my full-time carer (although I hate to think of it like that, it’s the truth.) I have a beautiful group of friends and an online community who lift me up every day.
My life is good. It’s precious and wonderful and I am grateful for every breath.
Mostly.
I am one of millions just like me. People living with or despite conditions and illness. We’re doing our best. For some of us that’s actually pretty messy and awful at times. Most of which you won’t ever see. Some of us can’t get help. Some of us aren’t believed. Some of us don’t have the financial resources or the energy or education or support to even try to get past what ails us. Some of us will fail, decline, die despite help and treatment. Some of us have trajectories that are all downhill.
So, what can you do?
If you’re one of the millions, try to find some small thing each day to focus gratitude upon. Look at what you can do. That’s a big ask at times, but I’ve come to realise that what we focus on magnifies. I’d rather focus on the pleasure of savoring a cup of tea than on the fact I can’t see the bloody thing clearly anymore. When I focus on what still works and what’s still good, peace comes to me. You can heal or endure when you’re peaceful, more than you ever can when you are stressed or angry. (I know this from experience, but I won’t say ‘trust me’ – it’s better if you experience this yourself too, so that you can own it as truth in your body rather than just a concept in your mind.)
If you’re not one of the millions yet, know that it’s entirely possible that one day you might be.
If you’re not one of the millions, please stop pandering that New Age drivel to us about how this is all a beautiful learning experience, or that our souls chose this, or that we somehow created it, or perpetuated it. Or how we can turn this into a wonderful soul-growth opportunity. Or that God only gives us what we can handle. Don’t hang that judge-y guilt-trip on us. It’s not helpful and it’s not kind. Especially when we are having a bad day, which, incidentally, may be invisible to you. If you are one of the millions, stop hanging that guilt-trip on yourself.
Know that if a vegan, paleo, superfoods, raw diet, prayerful contemplation, soul-searching, vibration lifting, better exercise routine, detox or no-negative-thoughts regime actually worked for everyone there would be no more cancer or depression or chronic illness, or genetic abnormality or disorder already.
Don’t hang judgement on us when the network-marketing-product, special diet, cleanse-in-a-box, worked-for-your-neighbour or someone-you-read-about-online cure, doesn’t work so well with us. Or when we just don’t want to try one of those things. Again. For whatever reason.
Don’t tell us we’re heroes or warriors. We’re only dealing with the hand we’ve been dealt. Don’t tell us that you don’t know how you’d ever cope or that we’re incredible the way we are coping. Some days we don’t cope. Don’t perpetuate the myth of the incredible brave-warrior-ill-person. It’s just one more pressure we don’t need.
Please don’t treat us like we’re invisible. Please keep including us and inviting us. Even when we’re unreliable, or can only attend for a short while or not in the way you (or we) would prefer.
Unless you’re going to be mean or judge-y. In which case it’s actually better if we’re invisible.
Let’s not hide illness and disability anymore. Let’s bring it out into the open where it belongs, instead of shaming ourselves and each other around our perceived frailties and failings.
Every single one of us will know illness or injury or critical failure of something we had previously taken for granted at some stage in our lives.
Let’s treat this with kindness. Kindness isn’t a cure, but it’s a very helpful medicine.
Holding you in my prayers and meditations,
Nicole <3 xoxo
Beautifully scripted.
Yes!!! Thank you for crafting such honest insight into the life of chronic illness. Anyone that’s walked in these shoes know just how difficult it is to find words to explain what this journey is like .. especially for those of us that don’t wish to be drawn in to the ever present loop of negativity or down the well of the ‘why me’s’. Gratitude, integrity, and resilience .. what I strive for each day and what you’ve managed to convey so thoughtfully.
💐 spoken from a beautifully -strong voice of endurance. Thank you.
I’ve been through it all too. So many doctors no answers lots of pain and so many people don’t understand they make us feel like it’s our fault. I wouldn’t wish this life on anyone it get’s harder and harder each day Nicole . I can’t smile anymore. If it wasn’t for your kind words and inspiration it would be hard for me to go on . I thank you from the bottom and top of my heart Nicole.
Love and Miracles
Jo-Ann
Thanks for letting us know what you need. Sending lots of love and hugs oxoxoxoxo
Nicole, thank you for your beautifully crafted words. Some known aspects and some thought provoking places in there for me. Always your blogs offer so much wisdom, down to earth suggestions and just simple beauty of thought. Love, always to you. Xx
Ah.
All so very familiar; very familiar sentiments.
It’s an interesting life, life with a chronic illness.
I am planning on focusing on gratitude more than I have been in the past…so very important.
Thank you for what you have shared here.
Sending you love. Thank you for this <3.
Thank you Nicole. Well said. Spot on. 👏👏👏 I have spent half my 50 years of life with a chronic illnes and it’s unwanted partners. I’m big on gratitude and self care/compassion yet it’s hard keeping the shield up. I’m tired of well meaning advice, guilt trips – “It’s your Karma” – and at times being treated like an invisible bad smell. Chronic illnesses suck. We need more truth telling, more empathy and less invisibility. Gratitude Nicole. Hugs ❤xx
oops! I can’t copy & save because you have the (c) and I won’t mess with that. Thanks for helping me today. TR
you can copy & paste the url & go to it whenever you have an internet connection! 🙂
today I am dancing with that bitch Depression. This post I happened onto has grabbed my attention. yeah, i have a catalog of health issues and another one showed up Thursday at 3 AM. It’s not about who has more or worse stuff, it’s about getting through each day. you speak truth eloquently, no wonder so many followers. I am going to copy and save this post so I can read and reread it. Thank you for sharing your journey. Terry
Such frustrating dealing with this day to day. It takes courage to write this, too. I hope you experience healing and I’m sending you light! Hugs to you, as well.
Dearest Nicole,
Its not about being inclusive to the current topic in discussion or wanting to be a part of the “cool gal” group. Been a part of the one million on some days , not been a part of the one million during some other days. However when I can , as you said, I just make the most of it. Some actually wonder what s there on our plate to be so cheeky and happy about.Understanding comes ,when the folks we know ,experience this sudden instability in their health and not much later ,pity party follows when they bounce back to form( good for them though :)) Yeah, honestly donno why and for what reason/ lesson this happens, but I honestly trust the fact that the one million have genuinely beautiful experiences in life as well ( they just focus better on each moment; that’s all)….Plus we all found your blog and your frienship… So smiles… 🙂
Hugs,prayers and Lots of Love
Thank you for divulging your noble journey with chronic pain. I, too, have lived with this ongoing disability since 1998. It really does take a concerted effort to find something to be grateful for some times. But, I agree with you. If you can find one thing to be grateful for, we can manage one more day, in hopes of a better day soon. Best wishes.
Ugh, so well said. I too hate when people think I’m wasting my life because I seem fine on the outside when on the inside it’s beyond difficult.
I’ve spent years trying to force myself, to force the energy, to force the effort for the sake of living up to society standards but I’ve given up on that now. I will just do me and shut out anything else that isn’t helpful because, as you said, things are hard enough already.
I hope you have a nice day, which ever day you read this.
Thank you thank you thank you! Wonderful post! Everyone on the planet should see this, not just your 3 million awesome followers 🙂 xxxx
Hi Nicole <3
I truly love this…it has provided me with some insight as to the questions I have been asking about my own health experience..The part most resonating with me is…. please stop pandering that New Age drivel to us about how this is all a beautiful learning experience, or that our souls chose this, or that we somehow created it, or perpetuated it. Or how we can turn this into a wonderful soul-growth opportunity. Or that God only gives us what we can handle.
I have been questioning this so much….I know I have previously subscribed to this…for me it was about getting my head around what I went through, even though there was something in this that just didn't sit right.
So maybe sometimes there is just no reason for it..it just is? mmm this has stirred up some areas for me. Thank you.
Much love and BIG hugs
Jacq xx
I care, Nicole xoxox
Brilliant post. Love that you’ve mentioned people telling you about all the New Age stuff if you have something wrong with you. I remember a friend said the best thing ever to me one day. I’d tried so many ways to cure an issue I had, and her reply was ‘maybe your body’s just fucked.’ After that I took the drugs and stopped thinking it was all my fault, and I should be able to cure myself
Thank you Nicole. Love and hugs. ❤️
I live live love this post! Thank you for expressing exactly how it is.
This is a wonderful post, I’m sorry if I’ve ever done any of the ignorant things and thank you for letting me know how to support you in what you can do everyday
Thank you for articulating exactly what life with Lyme or any chronic illness is like. Even my closest family members don’t get it. “But you look so well!” “You’ve been doing great!” “You’ll be fine.”
People seldom get to know the real you, but in my case it’s because I tend to hide my illness. I put on my best effort to socialize, and then pay for it for two days. I end up so tired that you’d think I’d been at a music festival burning the candle at both ends, when all I did was dinner with friends. Chronic sufferers know what I mean; fatigue that even a long nap will not cure.
I’ve learned that those precious friends and partners that see your disease and take the time to understand it, but see more of you then just your disease are so very rare. Former friends at one point believed that I would lie when I said I was too tired to attend events. Never bothering to understand or have any compassion, in their defense Lyme isn’t understood by many ppl in Australia. Lyme can be a lonely disease, I’m not being dramatic. I’ve lost a few friends along Lyme’s journey but it has a way or weeding out those that probably weren’t right for me.
I’m working so hard on self love that I’m much more honest with my limits these days. I admit to people test I ll need a nap in the afternoon, I nap everyday. I tell friends that I ll be at dinner, that it won’t be a late one and if they ask why I politely explain that I don’t do well with late nights and it takes a lot of me. It doesn’t matter what they think, they’ll think whatever they like anyway. People can only meet you as far as they’ve met themselves. What matters most is that I’m taking care of myself.
Oh dear. Huge comment. Sorry Nicole. Clearly I need to blog about this! 😆God bless you.
These are important words. Invisible illness is worse than frustrating. Most of us deal with things of this nature (Type 1 Diabetes and MS and something else no one has a clue where to look for….). Watching mom, I realise, how much I need to focus on what she can do and your blog is a definite piece of positivity in my caregiving. Thank you (I think that isn’t a word, but I like it).
In simple terms …….. Much Love !!, love Paul
Love and light to you Nicole.
What a wonderful rant, go you! You are sooooooo loved. Xxx
Oh Nicole, what an incredible post – so, so, so helpful for those who suffer and also those who haven’t yet. Thank you for opening and sharing. You are in my heart – I too am sending you love and healing xx
Oh lady! I FEEL YOU! I couldn’t have said it better myself! Between the inflammatory and arthritic deposits of scar tissue from scleroderma, I had no choice but to be on a daily steroid, thus the puffy face and 10 extra lbs that don’t budge! Well, we know the past 2 1/2 years I have been plagued with infection after infection. The immunosuppressive therapies finally took its toll. Got off of the steroids, and now have been battling infections nonstop. Now I have the inflammation back and the infections struggling to disappear. This strong antibiotic I’m on now is working.. Finally! Hopefully, I will be great by TTT! I agree.. anytime someone hears of my ailments they want me to join a networking marketing business, because they have the magic cure. I have found, there are no magic cures for chronic illness/pain. It is bit by bit. Some of this, and more of that. Strict over hear, and radical change over there. It is by trial and error that we find some middle ground, where we can get our bearings and do what we CAN. By the looks of me, no one would know. Nor by talking to me, as my vibrant energy comes from the Spirit through me, as me. After extending myself, I am sure of days like today.. not wanting to leave the house. Not wanting to talk or work. Just wanting to lie still and drift off. Thank you for your honesty my friend! Can’t wait to see you soon! Love you Momma Nicole!!
Yes to everything you’ve written 🙌🙌Love love ❤️
Sending love and healing