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Chronic Fatigue Syndrome and my Healing Journey

Updated: Feb 27

Sisterhood founder Hannah's story...


I am writing this sat outside, looking at the sea, on the other side of the world and in the opposite climate to where I lived most of my life. I am in the middle of a small health crisis, I am boiling hot, my head and back are throbbing and inflamed and arms and legs tingling and heavy and I don’t have the energy to get up and walk the 5 minutes down to the beach.

I am also sat here flooded with waves of gratitude and joy, for I would not be sat here with one of my closest sisters, free, if it wasn’t for the path my health has put me on. I’ve not felt this bad in months, but as I have just been reminded, because I was struggling to remind myself, this is not a set back but another learning process, a chance to unblock more energy and disassociate from physical discomfort and mental disruption. This too will pass.


It was tempting to wait until I was feeling better and more energised to write the pathway of my healing, but I felt it was more honest (albeit harder) to write from within it. My hope is that it might resonate more with anyone suffering. For anyone who has not been able to get out of bed in the morning, who feels as though they can’t breathe because they are so restricted against their bodily sensations, who dream of sleeping and not waking up some days, who have wanted to just ‘sit this one out’ for a day, week, month, year because it’s just too hard, I’m with you. I’ve been there, I’m there today, but may not be tomorrow and it’s OK.


I used to think that my preoccupation with my health (once I stopped denying my reality and acknowledged there was something seriously wrong) was self-centred, egotistical and not important. I thought that I just needed to get on with it, try and ‘get back to normal’ and that it would just go away. My ‘normal’ was what made me ill in the first place, and striving to get back to that point I now see was madness.

Suffering (a term I use broadly for any physical, emotional or mental pain or discomfort experienced for any reason), has been the key to freedom, expansion and realignment with life in ways I never imagined possible. I used to think that my preoccupation with my health (once I stopped denying my reality and acknowledged there was something seriously wrong) was self-centred, egotistical and not important. I thought that I was to blame for being unwell and that I needed to just buckle down and get on with it, try and ‘get back to normal’ and that it would just go away. My ‘normal’ was what made me ill in the first place, and striving to get back to that point I now see was madness.


I burnt out through working too hard in a small charity, fuelled by anger at social injustice and frustration at the system and becoming so outside of myself in the process that I couldn’t see the effects of the stress I was placing on myself. Outside of work was constant partying, not saying no to any socialising and being the first and last person standing at anything and everything, literally. I was also constantly worried about others and tried to hold everyone together, had a poor immune system from childhood illness, got a concussion and generally rejected self-care. All of this, inevitably, lead to breakdown. I realise that this ‘normal’ is reality for so many people, women in their twenties in particular, that I wonder that half the developed world isn’t in bed unable to move.


My health journey began with becoming more and more ill more and more regularly, to the point where I lay down in my mums caravan one day in 2017 and was unable to get up again. I felt as though gravity was sucking me down into the earth, any impulse for the tiniest movements had been wiped, I was foggy, unclear and unable to concentrate or think about anything except how bad my body felt. This feeling, to a degree, has stayed with me since. There have been times when I have felt almost OK and times when I have felt worse, most frustratingly often at unpredictable and illogical points. I was diagnosed with Chronic Fatigue Syndrome in late 2017 (this diagnosis is a non-diagnosis of anything else which may cause symptoms, also referred to as ME, and essentially a ‘mystery illness’). My mortality and total fallibility was shown to me in a way I had (somehow) never ever considered in my late twenties.


Response


The following couple of years included a lot of change, CBT therapy, pacing, developing understanding of empathic personality type, learning to say no, withdrawal from social activities, quitting my job, ending a toxic relationship, stopping drinking, stopping smoking, taking on ‘extreme’ diets, seeing ‘experts’, endless trips to the GP and lots of tears. All of this, and a desperate need to understand what was wrong with me, be cured, and go back to normal were exhausting and confusing. Many elements helped to a certain extent, and all of these actions were ‘doing no harm’.


However, despite some good days and small breakthroughs I was in the same position. I couldn’t do normal things and live my old life, I lacked energy and was in pain. At the same time, there was an underlying feeling of relief, which I wouldn’t admit even to myself at the time, of being exempt from taking part in the intense seemingly never ending cycle of work, life, partying without purpose or foreseeable end. I had never wanted to own a house, have a ‘successful career’ or a conventional family, I knew this, yet was living in a way which suggested that this was my path, despite consciously knowing it wasn’t. I thought that because my job was meaningful and I loved it and I was helping people, and that I had loads of friends and loads of fun it was OK, and that I would do ‘those other things’ at ‘some other time’. So I was (secretly) relieved but also angry, resisting the pain and energy loss and grieving my old way of life which I was deeply attached to. A little like mourning the loss of a relationship which you knew was harmful and caused pain but which you nonetheless became deeply involved in and attached to on many levels. I lived for some time in this period of grieving, anger, and striving to ‘understand’ and ‘cure’ my illness, a full time occupation for the mind and body and exhausting in itself. My whole identity, based on my work and socialising, was totally crushed, and replaced by this ‘sick person’ identity which I was clinging to and rejecting all at once.


At the same time, there was an underlying feeling of relief, which I wouldn’t admit even to myself at the time, of being exempt from taking part in the intense seemingly never ending cycle of work, life, partying without purpose or foreseeable end.

The deeper changes began when I started approaching life from a totally different standpoint. The start of this journey, for me, was yoga. Before becoming unwell I used to swim 3 times a week, cycle 10 miles a day and basically never sit down except when at my computer at work. No longer able to exercise in the way I had, I decided to try yoga which I had only done a couple of times before because I heard it was good for you and good for stress. I slowly became obsessed, so grateful for a way to move and use my body that felt good without having to use alcohol or medication or be asleep. After quitting work my routine became focused around yoga, which I did using videos at home because getting to classes was too much, and this began to feel more and more meaningful, and a revelation to my body each, morning. I eventually decided to, supported by my mother (no.1 sister) and close friends, to do my yoga teacher training in 2018. I almost didn’t make the training due to a chest infection and near breakdown the week it started but I went with the hope that I would do as much as I could and take it from there. This was the start of my journey into the realms of ‘spirituality’ or whatever word you want to use (this concept was something I had totally rejected and looked down on my whole life, being staunchly atheist and essentially close-minded). I had the slow realisation, through meditation, reading and philosophical teachings, of the shared human experience and consciousness, that we were all the same. The concept that everyone experienced pain and suffering, that many others were seeking peace and freedom and taking an interest in their inner experiences and how these are inextricably connected to the world around them, and had been for thousands of years, was a revelation. The seeds were planted and what has followed has been an intense journey of self-discovery, self-acceptance, truth, honesty and connection with others and with the world I couldn’t have imagined. Yoga and mindfulness have been my vehicle for re-connecting and deeply transformative; realising that pain and suffering are not ‘real’ but experienced, and that your experience can be shaped and chosen has been life-changing.


Resilience


To be able to accept, deal with, and appreciate what is happening for me in any given moment, and to use my energy to appreciate and feel grateful and connect with others is invaluable, as it is internal and renewable. The ‘letting go’ and relief that comes with this realisation has reduced my direct experience of physical conditions

Whilst many external changes have had an effect on my health and how I feel on a day to day basis, diet in particular, meditation and meditation in the form of yoga have allowed me to form a new relationship with my body, which is often in discomfort or without energy, without rejecting it. It has allowed me to leave behind the chaos created in the mind by chronic illness (depression on what is lost, anxiety about the future). To be able to stop striving for perfect health, or optimum energy levels (whatever these are), or feeling ‘normal (whatever this is), as well as disengage from worry about what will happen to me, if I will ‘get better’ and negative thought patterns is freedom. To be able to accept, deal with, and appreciate what is happening for me in any given moment, and to use my energy to appreciate and feel grateful and connect with others is invaluable, as it is internal and renewable. The ‘letting go’ and relief that comes with this realisation has reduced my direct experience of physical conditions and continues to do so. I have embarked on a process of adaptation to what is, rather than resistance or denial, which can be applied to all areas of life with some dedication.


This is not to say that it is easy. The work is every day through meditation, integration, learning from others and reflecting, something which I have had to totally re-shape my life in order to be able to do. There have been many times that I’ve fallen into a hole, including yesterday, from which my sisters have helped pull me out from, where even meditating or doing the work feels too hard. I couldn’t have taken on the journey I have done without the teachings and wisdom of the seekers before me, and the amazing strong and powerful women I am lucky enough to have around me. I have let go of feeling selfish for my preoccupation with my own well being and understand that this is a preoccupation with the human condition, the relationship between mind body and spirit. I think that this is as worthy a preoccupation as any other, and as it is my experience of life at the moment it makes sense to live within it. The relationships I have developed with so many women on my journey have been invaluable to keeping me going, and I know I have, and will continue to, deeply support others in need.


I am now filled with gratitude for my illness - even on a day like today when I am in pain and will need to rest for the afternoon exhausted after sitting and writing - because it has brought me to a new experience of my existence. I am slowly letting go of the ties, beliefs and practices which tell me life has to be a certain way, and will do so for the rest of my life (I hope) and the work as I said is every day. If I can do this and also have a bit of a laugh at the same time that’s enough for me, and would be for anyone. I am so grateful to be able to share my experiences with others who are struggling in the hope that they may welcome the transformation which is available to them, whatever this might look like.



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All images are generously loaned to us by number 1 photographer sister and ultimate babe; Imogen Forte - buy her prints here and see more of her amazing work: www.imogenforte.com