I keep thinking about hope recently. I’ve been feeling quite conflicted. Is it true that ‘hope is a prison’ or is it a ‘powerful weapon’. Is having hope a hindrance, or a necessity for survival? When you have a chronic illness, you know there won’t be a magical cure. There is a high possibility that my health will just deteriorate over time. That things will only get harder. So what am I hoping for exactly? Hope is ‘the belief that something is possible, but not yet certain to happen’. It implies a possibility of a different future. Is having hope just putting off the inevitable, stopping me from fully accepting my fate? Is it delusional to think that there will be something better on the horizon? I’ve found it hard to put into words what I’m hoping for exactly. Yet still this feeling of hope continues to simmer away in the background, like low embers from a fire, burning without a flame. You can barely see it some days, but with a gentle stir, the hope starts to glow again. There is something incredibly primal telling me to keep those embers glowing.
Maybe I’m not hoping for my body to get better per say, but more for my mind to adjust, to strengthen, to build resilience perhaps? Humans are quite good at adapting to their surroundings, yet dislike the process of change. It feels uncomfortable. Especially when the change is happening within your own body. Maybe I’m just hoping that change will get easier to cope with? I keep trying to find a rational reason to all this. An obvious answer to explain everything and why this is all happening.
I’ve always been the type of person to try and think in logical terms, facts, science (which might surprise my husband as I’m always day dreaming). But it’s more that I’m trying to find a rational explanation for things. A reason why I feel the way I do. Why my gut may be telling me something, or my instinct is pushing me in a particular direction. A way of knowing, not just guessing. I want reassurance. Searching for safety in certainty. Yet I’ve come to understand now that you can’t explain away everything in life like that. Humans are just too complex. Life is just too complex. You need to find comfort in chaos.
There’s no black and white answers, there is mostly grey. Two opposites can exist at the same time. That’s where I think modern medicine is failing us. They don’t factor in the complexity of human emotion, or how strongly our environments can impact us. They don’t always acknowledge that they don’t know everything, that medicine doesn’t have all the answers yet, that some things can’t be explained away with pure logic. I’ve never heard a Doctor admit to me that they don’t know something. I think it scares them, or damages their egos, or that it doesn’t fit in with their narrow view they have been taught (they are mere mortals after all), so they often push the confusion and blame back to you. It’s your fault, you’re lying, you’re making it up. I think they give up too quickly. If a handful of tests don’t show them immediately what’s wrong, they give up and explain it away by the person having mental health issues. It must seem easier that way, quicker, neater, to explain the unknown in terms they can understand.
Doctors need a bit more trust, hope and faith in us, that we know when something is wrong in our bodies. To keep searching for an answer even when things aren’t so obvious. To admit to us I don’t know, but I will keep trying to find an answer with you. Please give us that. Don’t they realise how much that would mean to us. That it would give us hope, the strength to keep fighting?. I wouldn’t lose confidence in them, in fact, their humility would strengthen my trust in them. It would show me that they know where their own knowledge ends, and where they need to seek further help and assistance. That they are human too, and understand what it means to be human and ill and scared. As much as we want answers to why we are ill, we also want compassion. Someone to say I’m sorry you are going through this. You are not alone.
I’m not sure where this distrust in the patient has come from. The automatic assumption that sick people are all attention seeking, or drug seekers or hypochondriacs. What could we possibly all gain from this? Why do you treat us like criminals. Guilty until proven innocent (ill), instead of the other way around. Why is it such a sin to feel emotional? Cant you see that we need reassurance, not blame. Is it really so irrational to want to feel better? Isn’t wanting to survive the most rational thing that humans could ever feel?
They drummed it into us during our Nurse training that we must treat people holistically. In theory this is a wonderful concept. But it very rarely happens in practice. Writing it down in a policy doesn’t make it true. It feels like an empty promise. How can we possibly treat someone holistically when we only have 5-10 minutes to speak with them at a consultation? How can we treat the whole person, with limited resources to go around to everyone, time being one of those precious resources?. As a healthcare professional, how could I possibly find out all I need to know about you in such a short amount of time? How could I know about your past traumas, your environment, your losses and grief, what diet you have, the people you surround yourself with, are you happy, fulfilled, do you have a purpose, what are your hopes and dreams, what are your genes and family tree like? We only look at quantitative data such as blood tests and scans, but we also need qualitative data, your interpretation of how life has treated you, how your illness is effecting you. Yet the latter is often discredited. It’s not logical enough. It’s too emotive. Separating the mind from the body. But this doesn’t work. You can’t separate a human from their emotions. We need to accept the chaos, even in medicine. At least acknowledge it, instead of pretending it doesn't exist.
I’ve come to find that autoimmune diseases especially, like ankylosing spondylitis, are incredibly complex. There is so much that we don’t understand about them yet. And the word yet is where hope comes in again. I do have hope that we will understand them better in the future. We are starting to understand the impact that things like genes, stress, inflammation and the gut has on our immune system. But even with this new research, it’s not in the mainstream yet. It will take many years for the NHS to adopt certain practices because it needs to go through rigorous policy changes, which I understand, but I don’t like the way that modern medicine makes people with autoimmune diseases feel. Like we’re the problem. It’s not our fault that diseases are complex. It’s not our fault that the modern environment is changing at such an alarming rate that our bodies can’t keep up. It’s not our fault that new weird viruses like Covid are impacting us in strange ways we don’t fully understand yet. Stop making us feel like it’s our fault that we have emotions and a body that reacts in a myriad of ways to systemic inflammation. Please don’t punish us for sometimes knowing more about our own condition than you do. We live with it, day in, day out, of course we are going to search constantly for answers. This does not mean we are crazy or trying to question your authority. We are simply trying to exist, to survive. Please don’t blame us for the failings in the healthcare system. Please try and work with us. We are coming to you in an incredibly vulnerable state. You are in a powerful position to help, we are at your mercy. Let us concentrate our energy on healing, not fighting against you. The disease is hard enough to live with, without having to navigate the medical system, it’s unequal power dynamics and all its complexities.
The sad thing is, it’s not always the Doctors fault either. It’s ‘the system’, so where does that leave any of us? They too are human and are getting effected by stress and burnout and pressures. There is a huge blame culture in the NHS. People are terrified to speak out and ‘whistle blow’. When the Junior Doctors had to go on strike as a last resort, they were blamed (by the former Prime Minister) for the long waiting lists to the NHS, even though they have been shouting for years that the system was broken and they needed help. Leaders gaslight the Doctors, the Doctors gaslight the patients, the patients gaslight themselves. Blame gets moved around like a chess piece. All the while the sick get sicker. A lot of the time, hope is the only thing that keeps the Doctors going too. Hope that things will change. Hope that they can make a difference.
My gut instinct and hope were the only things that kept me searching for an answer and a diagnosis for over ten years. I often had to ignore what Doctors were telling me. Nothing is wrong with you. Don’t they realise how cruel that statement is. That wasn’t reassuring, that was stealing hope from me. Causing a disconnect with my mind and body, forever questioning my reality. I had to ignore the evidence, the ‘logic’, no test (at the time) had picked up on what was wrong.
I never questioned that feeling of hope then. I couldn’t logically explain why I knew something was wrong, but I kept going. So maybe now, I shouldn’t question this feeling of hope that simmers in me. Just trust it, have faith. My logical brain can’t explain it, but I need to trust in the knowing parts of my soul and intuition. It feels like the way to healing. But if I told a Doctor that, they would probably throw more pills at me and write ‘mentally unstable’ on my notes.
I’ve never been a religious person. It just didn’t make sense to me before. I was too caught up in trying to explain everything away with logic. How could there be a big man in the sky dictating everything and everyone. I didn’t like all the rules and how certain people twisted them to their own advantage. I disliked it when people said that everything happens for a reason, even in the context of my mother dying. How could my mum dying be for a reason? How could ‘someone’ make the deliberate choice of taking away a mother from her children and husband? But now I understand they were trying to give me that tiny glimmer of hope, even when things didn't make sense.
I will always remember the nightshift when I was a Student Nurse at a care home, looking after a lady in her 90’s who had cancer. I didn’t know it at the time, but that would be her last night on this earth. But she knew it. All her tests and observations were the same as they had been the night before and the night before that. But she kept saying to me ‘Can you hear the angels?’ ‘I can hear their trumpets playing and I can see their beautiful wings’. She would point up to the ceiling and a sense of peace would relax her entire face. I asked her if she was scared. She looked at me with confusion and said ‘But why would I be scared. It’s so beautiful’. A few hours later she died peacefully in her sleep, I held her hand as she took her last breath. I remember going home the next morning and I couldn’t sleep. My logical brain was so busy trying to find a reason for what she saw. Trying to find the scientific reason as to why she heard and saw things that weren’t there. Why couldn’t I just accept it? Why was I so adamant that my perception of things was the correct and only way? I wish I concentrated on the fact that she was at peace, instead of questioning reality.
Now I understand that you don’t have to necessarily believe in a particular god or religion, but you can be spiritual. You can believe in something ‘higher’. Not necessarily a person, but a sense of believing in something greater than oneself, a greater power. We don’t know everything, and that’s ok. But you can also believe in logic, and science and to want to find a rational explanation to things. All this can exist in the same person and that’s ok too. Not everything has to make sense.
I love the song by Ren called ‘Hi Ren’
He too has an autoimmune disease (however his is Lyme disease) that took 8 years to get diagnosed. The delay in treatment left him with brain damage. The Doctors often explained away his strange symptoms as bipolar disorder or other mental health issues. In this particular song he describes the battle of the two voices inside his head that were in constant opposition to one another. The more rational and logical voice, and the other one he calls hope…
The lyrics at the end of the song say:
As I got older, I realised that there were no real winners
And there were no real losers in physiological warfare
But there were victims and there were students
It wasn't David versus Goliath, it was a pendulum
Eternally swayin' from the dark to the light
And the more intensely that the light shone, the darker the shadow it cast
It was never really a battle for me to win, it was an eternal dance
And like a dance, the more rigid I became, the harder it got
The more I cursed my clumsy footsteps, the more I struggled
So I got older and I learned to relax
And I learned to soften and that dance got easier
It is this eternal dance that separates human beings
From angels, from demons, from gods
And I must not forget, we must not forget
That we are human beings
I love this song because it reminds me to let go of my grip on old ideas that I once held onto so strongly. It reminds me to relax into life a bit more. That things can be messy and confusing with conflicting emotions, but still be ok. That I can be ill but still live a beautiful life. That I can be in pain but still have fun. That I can be ambitious and have goals but be mindful and rest when needed. That life can be hard but still worth it. That I can be a good person but be deeply flawed. It’s the fighting against things all the time that is causing the distress. It’s the trying to be perfect all the time. It’s the trying to fit everything into neat little boxes that’s scrambling my brain. I need to learn to trust that things will be ok, even if it’s messy, because that’s what being a human is all about. That’s where hope plays its part. Hope is a tool to help us ride the waves of uncertainty.
I’ve come to the conclusion that hope is absolutely necessary for survival. Hope is survival, and survival is the strongest desire we all share. We should use it to our advantage. It’s not toxic, or crazy or being unrealistic and illogical. I’m not being ‘too emotional’ or losing grip of reality to believe in the unknown. Because what is the alternative? To live in misery? To hate living? To become numb? Wouldn’t that be the most toxic illogical way to live? Isn’t it far better to live in some kind of ‘delusional’ state if it means I will live life more fully. But is it even delusional, or is it just living in the grey area of being human, of not understanding something…yet. Hope and illness are teaching me humility. Illness brings you to the very depths of what it means to be human. We are finite, but that's what makes us beautiful. Our imperfect, ill bodies are in fact the perfect example of the fragility of life.
When you are ill and spend a lot of time by yourself, it’s very easy to slip into a small world, looking through a very narrow lens. To put yourself in a box. I am sick. To think in very simple terms; today was a bad day because I was in pain. But with this new way of thinking, I’ve been trying to look outside of myself. To not let society, or myself, define who I am or what I can become or what I can think. I may be finite, but the possibilities are endless… It’s been incredibly freeing.
I’ve been finding ways of stirring those embers of hope again. If I can’t always find it within myself, then I need to look for external sources too, ways of finding awe and magic again. Find some inspiration. I’ve enjoyed getting lost in creativity, art, music, blogs, poetry, books, even reading up about space and the universe. Any way to stir up that lust for life again. To be curious. To explore. A way of reminding myself that there’s a much bigger universe out there. That’s nothing to be scared of. I don’t need to have all the answers, I just need to have hope and faith that things will be ok no matter what happens. I no longer worry what this may look like to others, if it makes me look ‘crazy’ or delusional. I know that it’s an essential part of my life now. It makes things easier to cope with.
If hope is ‘the belief that something is possible, but not yet certain to happen’, and to use ones imagination is ‘the ability of the mind to be creative or resourceful’ and the ‘ action of forming new ideas, or images or concepts not present to the senses’. Are they not one and the same? Maybe that is why writing feels so hopeful to so many. I always thought of creativity as a hobby, or an afterthought. Something I can indulge in when I’ve done all the other more ‘important’ things on my to-do list. But now I realise that it’s an essential part of being human. It’s what separates us from all other animals. I guess that’s why they call the study of art, literature and philosophy the humanities? I’ve pushed the creative part of myself away for too long, trying to ‘ground’ myself in the logical ‘real’ world, thinking that it will help prepare me for the inevitable, or toughen me up. But I feel that can only get me so far. Constantly searching for threats and reason is one form of survival, but can grind you down overtime. Searching for hope feels lighter, less pressure somehow. Sometimes I need to let the whimsical, playful, dreamer come out to play too. The one that likes to get lost in imagination and stories. The one that likes to believe in miracles and signs from the universe. The one that says there is no such thing as a coincidence. The one that has a child-like enthusiasm and curiosity. The one that really wants to believe that hope is the way to healing. That one day modern medicine can mean true holistic healing for everyone.
I now know that those two sides of myself can coexist in the same body. They are both needed to survive. They just need balance. A pendulum, like Ren says, eternally swaying back and forth from the dark to the light…
How about you?
What gives you hope? I would love to know in the comments.
Sending healing thoughts (and hope) to you all.
Lots of Love & Hugs,
Amanda x
So…hope for me is weird. I don’t hope for things, but I don’t NOT hope for things either. I know that whatever is coming is going to come whether I want it to or not.
I guess my hope is for myself, that I’m doing as much as I can to keep myself as healthy as I can. I know I’m fighting a losing battle. Chronically altered and all that, but I at least tried to have hope in myself that I am doing the right thing for me
I sometimes believe life is a lottery – you are either going to be lucky or unlucky and its beyond our control.
I think you have to have suffered in life to know what being grateful for small mercies is all about.
I have to ‘hope’ that if I am a lovely person, like you are, that there will be some moments in my life which will make me feel happier and I grab the happy moments, even the small ones, to keep me going. I have to accept that the dreams I had when I was a child, might not come true but have to readjust my goals to ‘feel’ as though they are possible i.e. hope.
I am angry when they say only ‘good people die young’ – what a load of nonsense cos that means I am not a good person – I suppose its out there so you feel that they died young for a purpose !! I suppose what else can you say to someone who has been taken away too early in life – how do you comfort someone in those terms. I suppose we all have to not take anything ‘good’ for granted and to cherish the ‘ happy’ moments because tomorrow is a different day,. With that we have to hope for another good experience in life.
Therefore is the word ‘tomorrow’ another way of saying ‘hope’ – as we don’t yet know what tomorrow will bring and we hope it will bring us something to make us feel happy, loved, needed, etc.
If someone says to you ‘I need you, I want your help, I want a hug’ – does that make you feel better about yourself and does that make you feel you have a purpose in life and therefore more hope– if only if its for that one minute in time? Does that give you ‘hope’ for a fleeting second.
There will b a Vicar of the Baptist Church moving in next door soon and I will certainly question him about why we need another religion? He doesn’t have problems with money and he is a successful businessman and will be sending his daughter to a private school. So if you don’t have any money worries, how can you really know what a poor person is going through? Yes, you can imagine it for five minutes but he will not be worrying every minute of the day how to pay the next bill or being cold in the winter. I almost feel that you can only preach to others if you have been through pain and suffering yourself. Otherwise surely they are hypocrites. Would it be worth following a religion and listening to them ‘preach’ on a website? If anything it will either make you feel at peace or make you angry so much so that you have a WILL to survive because of the anger they have instilled inside you?
Therefore ‘hope’ is multi-faceted and is like a diamond as it comes in many different disguises but ultimately it ‘keeps you going’ it is a raison d’etre in this world ….. Surely if you have no hope, you give up and leave the world??
Have you thought with your great blog that you could reach out to others who are suffering through another chronic illness so you can give them a ‘shared’ platform to talk about their hopes and fears or is it better to keep it just for your type of chronic illness?
The other day when I went for a walk with the U3A I found out that one of the walkers had an older gentleman in the family who was suffering from axial spondylitis and I wondered if you would give me permission to ask his relative if he would like to join your blog – would it be helpful to have someone who has suffered with the disability for longer? And a male? Just let me know and I will contact them as they, too, need to reach out.?
Surely ‘hope’ gives us a reason to live? Even if it comes in little blobs, the culmination of ‘hopelets’ stick together to make a bigger ‘hope’ in our brain. I feel as though our brain finds it easier to be negative than to be positive so maybe ‘hope’ in its uniquely positive format slowly addresses this balance and makes our bran into a more positive platform which is something we surely need. Like you, I believe that the mental and physical being is totally entwined and makes a difference to our health.
I remember all the happy moments your mum had and try not to think about the sad and cruel moments she experienced as we all want to remember your mum being happy as opposed to being sad. She had a hope that one day she would be pregnant one day but when the doctors gave her damming news and said it probably wouldn’t happen, she gave up ‘hope’ and didn’t use any contraceptives and hey ho – you know what happened so maybe that lack of ‘hope’ in that situation actually went from being negative and then to positive !!!
Have you thought about a ‘fund raising’ page? To help put more research into your chronic illness?
I think you would make a great person to give talks about life …… keep up with the brilliant blogs … :o) .
Ren is amazing and the irony of it all is that if he didn’t have his mental and physical pain, he might not have produced this more-meaningful music which is quite a difficult thing to come to terms with. Did he get Lyme’s disease from being bitten by a tick? His suffering is giving us ‘hope’ …I also believe the ‘geniuses’ in life are like this – good on them xx