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.
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!
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!