#9 Finding Purpose

My personal journey on finding purpose after having to give up my job in the NHS due to chronic illness.

What is my purpose? This question has plagued me most of my adult life.

It’s been swirling around my head even more in recent times. Last year I had to quit my job in the NHS because I just felt too ill. I had completely burnt out. At the time I didn’t know what it was. Obviously now I know it was down to having Ankylosing Spondylitis, but only partly. I can’t blame it all on that. Looking back I think I placed too much importance on my job as a source of purpose and self worth. I had forgotten the other parts of myself. The last year of being ill has given me the space to think. A lot of time in bed gives you plenty of thinking space (for better or worse). I came to realise that I was too busy and too tired to do the things outside of work that lit up my soul. All I had energy for after work was feeding myself, chores and TV, perhaps the odd doom scroll on Instagram. However, this didn’t magically change as soon as I stopped working. For the last year I’ve been on auto pilot. I’ve just been in complete survival mode trying to get through each day, resting, waiting for appointments etc. Most of last year all I did was watch TV and that’s ok, I don’t feel bad for it, my body really needed to just rest. It wasn’t even an option to do anything most days, I just had to ride it out. But now looking back I think I had been on auto pilot much longer than I care to remember.

I kept thinking to myself, I just need to hunker down and get through this next bit and then I’ll start ‘living’. But problems kept coming, no energy magically materialised, no feelings of health suddenly swept over my body. So I kept pushing back the actual living part of my life, the bits that sparked joy or made my soul happy. If this illness didn’t force me to stop and think, then I’m not sure how long I would have gone on living like that, maybe forever, maybe until retirement stopped me? It’s scary to think how much we miss out on by just being on autopilot or by being too busy.

I’m only now starting to find a rhythm again. I’m still awaiting appointments, heart and bowel investigations, and starting medications etc. But the support I’ve needed for years is finally starting to trickle through. I’m having therapy now after being on the waiting list, I have regular contact with my GP who is keeping an eye on my pain levels, my mood and my bowel symptoms. My friends and family are starting to realise I need more help with certain things. I’ve changed my diet and eating loads more fresh fruit and veg, cooking from scratch most nights with the help of the hubby, I’m going for slow walks, having help with pacing and exercises I can do with physiotherapy. I’m prioritising sleep and rest. I’m writing this blog which feels amazing and connecting.

But still that question swirls around my head- what is my purpose now?

For the first half of the year I kept thinking, well when I go back to work I will feel better about myself and I will find purpose again. But what if I never feel well enough to go back to work, or to go back to a job that I enjoy? A lot of our self-worth is wrapped up into our jobs. It shouldn’t be, but society makes it so. So when I haven’t been able to work, I feel quite lost. Conversations with family and friends feels harder at times now. So much of our conversations are centred around what we did during the week with our jobs. When you first meet someone they automatically ask ‘so what do you do for a living?’.  I find the wording of that question funny in itself, what do you do to live? It’s essentially asking how are you living? And we first equate that with a job. But there’s so much more they could ask me. What lights up your soul? What gets you out of bed in the morning? What brings you joy? What makes you happy? What have you learnt about yourself and the world this week? What connections have you made? I wish people would ask those questions more. I’ve noticed now that I don’t have a job, people skip asking me altogether. Like I have nothing else going on in my life if I don’t have a job or I’m sick.

When I first had to give up my job I was a total mess. I felt I had no direction. I felt guilty. I felt lost. I felt shame. I felt I was less than everyone else. The first question people would ask me was ‘but when are you going back to work?’ which then heightened my sense of panic. It also took me a long time to ask for help in the form of government benefits due to the feelings of shame and stigma (wrongly) attached to them. (It doesn’t help our current government thinks that everyone on benefits is lying about being ill....but that could fill a whole other blog post).

Now I look back at that time and I feel like a completely different person. I still sometimes feel like a burden on my partner, he’s had to do so much, but overall I think I’ve started to find a new routine. I’m living more in the moment. I’m trying to better myself by writing, journaling, concentrating on inner growth instead of material and financial growth or social status. I’m soul searching if you will. Or as I read it the other day, making eulogy not résumé virtues. I do sometimes get the ‘It must be so nice having time off work’ speech. I can assure you most of the time it has been anything but nice. Being so ill you can’t work is not a privilege it was a necessity. It’s been soul crushing at times. I am just trying to make the best out of a horrible situation.

If I can never go back to work due to pain and fatigue then I need to keep filling up my cup in other areas e.g. spiritual, connection, friendships, family, travel, exploring, writing/reading, nature. To continue the inner growth and learning.

But then it went from, ok I shall do those things once I don’t have pain and once I’ve got some more energy. Once again, I was pushing my life down the road waiting to live when I felt better. However, I may never have energy. I may always be in some form of pain for the rest of my life. I need to learn to live with those things. I have to start living the life I can, right now. It may not be the life I had imagined, but it’s the one I have. Living life now might be celebrating the fact that I got out of bed and showered. I can either let those things crush me, or I can use it as a gift. If I can’t change my body, I need to change my mindset.

So then the question went to how can I inject as much joy into my life as possible, even on the days I feel terrible?

I’ve tried to use this time to think about how I can live the best life I can right now, with the body I do have, with the time, money and energy that I do have. Which is very hard to do, but what other option do we have? The positives have been that my illness makes me slow down and care for myself. It makes me try and enjoy the tiniest slither of joy that crops up in my day. It makes me so grateful for the days that I feel less pain. The days I can go for a walk and feel the sunshine on my face feels like a small miracle. I have more time to connect with family and friends in a more meaningful way. I can lean more into my introverted and creative self, which has been longing to come out for years!

Most days I’m stuck in bed and only have a small portal to the outside world looking out of my window. So I’m learning to observe the little wonders that arrive. The different bird songs. The changes in the trees through the seasons. The way the clouds change colour throughout the day. I’m reading more nature books so I can feel more connected to my environment. If I don't know what a plant is I spot on my walk I look it up. I know it sounds a bit hippy and woo woo, but noticing these small changes makes my soul happy. Observing the world around me helps to distract me from the pain, it brings me connection, gives my day structure and purpose. It also inspires me to write poetry and to write down my observations, and then share it with those around me.

But I don’t want to fall into the trap into thinking that I need to ‘be productive’ to find purpose or self-worth. You are worthy of love even if you are just laying in bed. Being alive means you are already enough. You are a miracle just being on this planet. Does that make sense? I don’t need to make this year off work ‘worth it’ by doing something with it. It was necessary. I am ill. I am surviving. That is enough.

This makes me look to nature again. In the wintertime trees become dormant. They shed their leaves. Their branches become bare. Flowers die off. However, we don’t look at them and say ‘argh you’re so unproductive’ or ‘You’re not worthy’ and start hacking down the trees each winter. We know it’s a necessary part of their survival. To rest. To recuperate. To conserve strength for next season. We let them be. We still marvel in its bare beauty. How the sunlight can shine through its bare branches and cast interesting shadows. How the bark looks and all it's textures. How it continues to nurture the soil beneath. But also, how much more beautiful does Spring feel when it does finally come back? (

Katherine May

has written a beautiful book called ‘Wintering: The power of rest and retreat in difficult times’ on this topic).

Maybe we will never have our grand springtime reawakening in the traditional sense with a chronic illness. We may never be in full bloom, mass of flowers everywhere. But we can celebrate each tiny bud that pokes it’s head out after winter. We can nurture each tiny flower that blooms. Just being a single flower on its own doesn’t take away its beauty. Each time we have a better day after weeks of a painful flare up, we can celebrate it.  Even if that just means a quiet nod, or an inner smile to ourselves. I made it through. I am strong. I am beautiful. Other’s may not be able to see that single flower, they may only be able to see the wins as a full on summer show of flowers, blind to anything else. But we know that flower is there and we can celebrate it.

It’s like the magnolia tree in my friends garden. It only blooms for around 2 weeks each year. The rest of the time it’s either bare branches or has quite plain leaves on it. But when it does bloom its so so beautiful. She says its worth it. So maybe we will only have a few weeks each year, or hours, or minutes each day that we feel totally ourselves with no pain and full of energy. But were still worth nurturing and loving, just like the magnolia tree.

I used to think it was all about fighting against this disease, but it’s more about fighting not to lose hope. We all need to find something that gives us purpose to push us to keep going.

Lets get away from the idea that we can only be fulfilled and a worthy part of society if we work full time. The chronically ill still having something to contribute to the world. A book called ‘The Lady’s Handbook for Her Mysterious Illness’, by Sarah Ramsey, discusses the idea that maybe the chronically ill or people with autoimmune diseases are actually the canaries in the coalmine so to speak. They are actually signalling to the rest of society that something in the way that we are all living right now is not quite right, we are all becoming burnt out. Our faulty genes are getting switched on. Maybe we all need to take note from the chronically ill and prioritise rest, to finding balance and to nurture inner growth. To finding out what our true purpose on this planet really is. Obviously I’m not saying we all quit work, but more, how can we find more balance and joy, even when we are ill, or have no money, or no energy, or when we’re busy? What brings us back to life?

I feel I have a lot more inner work to do on feeling comfortable not having a job at the moment. I feel finding my purpose will take me on a journey, and that’s actually quite exciting. Even though I have a lot of pain and fatigue, I still have a lot to give. I still want to contribute and I still love to help people. I’m excited to see where this next chapter in my life will lead.

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So how about you?

I ask you, what lights up your soul? What gives you purpose and hope? Even on the days that are filled with darkness, how can you find joy?

What do you do for a living, by which now I mean, how do you spend your time living?

How can you nurture your little magnolia bud? How can you celebrate the big, and small, wins?

Next time someone asks me, what do you do for a living? I will answer:

I spend my time learning, writing, exploring, being out in nature, trying to show up for my friends and family in the ways that I can, being kind, open, thoughtful, treating myself well, finding balance, learning to be more spiritual, practising gratitude, enjoying the small glimmers of joy in everyday life, finding the true meaning of life…

Then I will ask them, how about you?

Where they reply ‘Umm, I work in finance’.

I don't know about you, but I know which answer I would like to give (and hear more about)….

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Thanks again for reading. Sending you all healing thoughts.

Lots of Love & Hugs,

Amanda x

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P.S I will leave you with a poem by my favourite poet Mary Oliver, called ‘Wild Geese’ which I think sums this all up perfectly:

You do not have to be good.

You do not have to walk on your knees

for a hundred miles through the desert repenting.

You only have to let the soft animal of your body

love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

are moving across the landscapes,

over the prairies and the deep trees,

the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

are heading home again.

Whoever you are, no matter how lonely,

the world offers itself to your imagination,

calls to you like the wild geese, harsh and exciting -

over and over announcing your place

in the family of things.