Could I really be thankful for my struggle?
The things people say
Questions I can’t answer myself
A change in thought, for all
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
How you react will change the way a person opens up to you in the future. Stacey Philpot explains this well in this quote from her article 5 Things the Healthy World Should Know About the Chronically Ill World
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.
A moment of clarity
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.
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!

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.

All quotes taken from my chronic illness support page over on instagram which you can find here! Come and join our fantastic community!


Nyxie
April 17, 2019This 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
Amy
April 18, 2019That is such a lovely thing to say! Thank you, I really appreciate it 🙂
Rachel Williams
April 18, 2019Thank 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. 🙂
Amy
April 18, 2019Thank you for reading! 🙂
Hayley
June 9, 2019This 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. ❤️
Amy
June 9, 2019I 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
Sheron
June 10, 2019Ah, Amy you carry your illness with such grace.
This is a ‘lovely’ piece (in your Grans sense of the word).
Amy
June 11, 2019Thank you Aunty Sheron, that really touched me x
Amy
August 30, 2019Thank you for having me as part of your series! I’m really thankful for it!