Thankful For My Struggle – Finding The Good Living With Chronic Illness
Thankful For My Struggle – Finding The Good Living With Chronic Illness
Could I really be thankful for my struggle?
My two decade long struggle living with and fighting chronic illness has taught me many a thing; a great respect for the human spirit, a realisation of how strong I truly am, an appreciation of the most important aspects in life; amongst many, many things. It has shown me struggle, pain and suffering at a degree my young self didn’t think was possible. My beliefs have been tested at every turn. Could I be thankful for my struggle? Am I able to see the good living with chronic illness?
The things people say
I have and do face terms such as ‘everything happens for a reason’ and ‘it’s karma’, things people say easily to try and fill conversation when they feel awkward, don’t know what to say or just want to try to make you feel better; only leaving me with frustration and sadness. As they exit, I’m left questioning the fact that if everything truly happens for a reason then why am I so desperately ill? Why are children ill? What reason do we have to suffer?
If Karma is true, then what have I, what have we done to deserve this?
Questions I can’t answer myself
Part of the grieving process is questioning ‘why’? Trying to find some answer to an unanswerable question. A life with chronic illness will do that. It is endless and not helped by society’s need to question the chronically ill, to constantly impose the idea that they could and should be doing more.
I’ve faced this from complete strangers and from those who are closest to me and nothing breaks you more than this when you are fighting so hard daily to just survive.
A change in thought, for all
The newspapers report we need to just exercise more, but don’t give the same space for exposure of biomedical research showing the truth.
‘Just be more positive’, ‘You just need to get out more’, ‘stay positive’, sentences relayed so often they echo in my mind.
This is examined in a recent published research paper by Rebecca Murray et al, 2019¹ (where they take particular interest in gender representation) in which they find:
Media portrayals of conditions such as Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) demand exploration as the media is a potent source of information and meaning, and as such has the potential to inform public and professional understandings.We problematise these representations and discuss the potential impact upon public and professional sympathy, treatment options and long-standing, gendered constructions of illness.
Support
Instead of muttering these unhelpful suggestions, (that only imply the sufferer isn’t doing enough, isn’t being positive, could be doing more, whilst making a passerby or comforter feel better giving themselves something to say in comfort, or indeed pass in judgement) offer support in simple terms: ‘I know you’re doing your best’, ‘you’re so strong’, ‘you know your body, is there anything I can do?’. This, to a chronically ill person would be bliss.
We feel like we have to pretend. We know hearing about our illness gets old fast. Heck, it’s our illness and we’re tired of hearing about it. But sometimes it’s overtaking us and we may feel like it’s crowding out our relationship. So we might pretend. We pretend to feel better than we do. We pretend to feel more optimistic, less afraid than we do. All this pretending is done for your benefit, but can leave us feeling more alone in the long run. So when we do break down and tell you how afraid we are? When we’re honest about just how bad this flare has been? Your response tells us how honest we can be in the future. The weight of our illness(es) can be a lot for one person to carry. We’d love for you to be a safe place where pretending isn’t required.
I once cried on and off for a day because a friend said she looked up my illness on google and would help me the best way she could. She asked my advice, listened, asked about recent medical research and then what she could do to help. Simply her being there was all I needed. I’m not sure, to this day, that she realises the impact she had on my life that day.
A moment of clarity
Over a decade ago, during the period of me going from one treatment to another, desperate to find help in any way (none of these ‘treatments’ worked by the way, none cured me as they claimed, not one was worth the money. More to come on this in a future post.) I was in the middle of a Tapping session (like I said, I’ve tried it all!). Severely ill, my Mum, my carer, was in the room with me when the therapist asked a question that would prove quite substantial to my thinking (quite possibly the only positive to come out of the treatment).
She asked: What’s a good thing about being ill?
Years of pain flashed through my mind
I was shocked. At this time I’d lost everything. My chronic illness (read about my story here) so severe that I’d gone from a healthy, fit dancer, independent, loving life, living hours away from my parents home, to being bedbound, completely dependent on my parents for care in every sense: personal care, food, hygiene, medical care…everything. I’d lost my career, my health, my independence, my ability to do anything. I’d received a letter from my GP stating in his view I was permanently incapable of work and was discharged from my M.E Specialist for being ‘too severe’. I was in a state of grief, which with chronic illness ebbs and flows. The grief cycle never ending when your life is unterimined by chronic illness. My families life in utter upheaval, my illness completely affecting their lives also.
And here, someone who didn’t know me asked me what was good about my illness.
A long moment passed as I wiped my tear stained cheeks. It dawned on me that my struggle had made me even more compassionate. I saw others in a different light. Recognising difficulties they face and feeling a greater compassion and empathy for them.
Separating the good from the bad
This is only something that has grown, tenfold. My heart yearns to help others. I can appreciate the effort it takes for someone to achieve a task, one that to some may seem mundane or easy. I see this both with those who live and fight chronic illness and those who don’t. I’m not a mother, yet I can appreciate how difficult a parents task may be (I don’t know how you do it!), if they’ve had a sleepless night, or month, goodness do I emphasise. Parents I salute you!
I listen more. My struggles in life have taught me that we all struggle greatly and that we all need support. Everyone appreciates being heard and the way we respond is critical in helping each other cope.
My struggle has given me a strength that I didn’t think was achievable. And a appreciation for the most important things in life and the smallest of things.
Nevertheless, I don’t understand it. Nor do I believe it’s something I deserve. Everything doesn’t happen for a reason, nor am I being tested. My body is simply fighting complex illnesses with biological basis.
Strength
My strength is giving me patience to wait (not too long I hope) for help. I can do that because I see and I read the incredible biomedical research going on around the world every day.
I can fight this, with the support of my loved ones, with the fighting spirit of my Spoonie family, knowing the incredible scientists are on our side. However the way we treat each other as human beings in kindness can go a long way in how another copes with their struggles and that is something I’ll forever shout from the rooftops.
My illnesses have taken so much away from me, the past, the present and my hopes for my future, however my struggles have given me a hell of a fighting spirit and a world of compassion at my fingertips, I’ll be damned if it stops me from sharing it.
All quotes taken from my chronic illness support page over on instagram which you can find here! Come and join our fantastic community!
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Rebecca Murray, Katy Day & Jane Tobbell(2019)Duvet woman versus action man: the gendered aetiology of Chronic Fatigue Syndrome according to English newspapers,Feminist Media Studies,DOI: 10.1080/14680777.2019.1595694
This is a beautifully written blog post. You are so strong, and I can tell you are one hell of a fighter.
I’m going to be cliche and thank you for sharing this, but I truly am grateful that I read this today.
Thank you for sharing about your illnesses. I definitely need to work on being more compassionate and understanding towards those who struggle with things I don’t. 🙂
This was such a strong and powerful read Amy, thank you so much for sharing it.
I’m still awaiting a firm diagnosis for my own chronic illness (most likely endometriosis) and in the year it has affected me, I have become a completely different person. The grief for the life I used to have and the person I used to be is very real.
During the worst days, I will try to remember your positive take on everything. There is strength in the struggle though it can be hard to feel strong. ❤️
I am so very sorry to hear of your struggle with chronic illness. I know that even just finally receiving the firm diagnosis is trying in itself and involves so much. I have always found that at least, once a diagnosis is achieved it is helpful in reassuring and being able to take the next step, even if, as with many of my illnesses, this isn’t necessarily treatment options, it enables better care and acceptance within the medical profession and a greater understanding with those in your life.
Grief is an awful thing, I can relate with you and I’m sorry you are feeling it. Be kind to yourself during this time, it is a massive upheaval in your life and can take time to process.
It can also be very hard to be strong. I am certainly not always strong, or positive! Somedays it all just comes crashing down! And I think it’s important that we share that too so that we can relate to not being alone in that too. It has taken me a long time to see things from this perspective, be kind to yourself during your journey. We do have strength in solidarity and the online chronic illness community is incredible for that xx
This is a beautifully written blog post. You are so strong, and I can tell you are one hell of a fighter.
I’m going to be cliche and thank you for sharing this, but I truly am grateful that I read this today.
Take care.
– Nyxie
That is such a lovely thing to say! Thank you, I really appreciate it 🙂
Thank you for sharing about your illnesses. I definitely need to work on being more compassionate and understanding towards those who struggle with things I don’t. 🙂
Thank you for reading! 🙂
This was such a strong and powerful read Amy, thank you so much for sharing it.
I’m still awaiting a firm diagnosis for my own chronic illness (most likely endometriosis) and in the year it has affected me, I have become a completely different person. The grief for the life I used to have and the person I used to be is very real.
During the worst days, I will try to remember your positive take on everything. There is strength in the struggle though it can be hard to feel strong. ❤️
I am so very sorry to hear of your struggle with chronic illness. I know that even just finally receiving the firm diagnosis is trying in itself and involves so much. I have always found that at least, once a diagnosis is achieved it is helpful in reassuring and being able to take the next step, even if, as with many of my illnesses, this isn’t necessarily treatment options, it enables better care and acceptance within the medical profession and a greater understanding with those in your life.
Grief is an awful thing, I can relate with you and I’m sorry you are feeling it. Be kind to yourself during this time, it is a massive upheaval in your life and can take time to process.
It can also be very hard to be strong. I am certainly not always strong, or positive! Somedays it all just comes crashing down! And I think it’s important that we share that too so that we can relate to not being alone in that too. It has taken me a long time to see things from this perspective, be kind to yourself during your journey. We do have strength in solidarity and the online chronic illness community is incredible for that xx
Ah, Amy you carry your illness with such grace.
This is a ‘lovely’ piece (in your Grans sense of the word).
Thank you Aunty Sheron, that really touched me x
Thank you for having me as part of your series! I’m really thankful for it!