A story by Lorraine, Across the UK
What challenge does this story focus on?
My main challenge was being heard whilst my physical health rapidly deteriorated. I found it very difficult to recover after a serious episode of Pneumonia with multiple complications. This meant I wasn’t allowed to eat or drink for weeks. Many doctors were involved in my post-hospital care, but they didn’t listen to my own concerns. This led to more than one incorrect diagnosis and the deterioration of my mental health. It also put strain on family relationships and left me bedbound most days.
How has this challenge affected you?
Dealing with my main challenge made me realise how important it is to say no if treatments aren’t working and to be my own advocate. A lot of my doctors still have disagreements, but I no longer view my own emotions or reactions to medications as less important. I now know I have choices . Whilst it’s true that I have less energy and take more tablets these days, when I feel negative about this, I remind myself illness is not a competition and because of my treatments I’m enjoying life.
What has or is helping you to move forward with this challenge?
I found writing short letters to my doctors or making a list of bullet points before appointments a helpful approach when really wanting to move forward. Before I adopted this strategy, I would be interrupted or belittled, largely because sadly, in my experience, we still live in a society that assumes if you require a wheelchair, your ability to make your own decisions is impaired in some way. I am a published Poet, so even when bed bound, I would use my phone to write a piece just long enough to fit on Twitter. This was manageable and gave me something else to focus on. I was also in the middle of my PhD at University when I experienced such complex ill health. Wanting to get well enough to continue was undoubtedly an everyday motivation.
What have you learnt as a result of this challenge?
My voice matters. I deserve to be heard because I’m the one who experiences the pain that my health conditions bring each day. No one else can live my life for me. I have a choice between passive and active treatments. Nobody but myself can choose what medication I put into my body or what procedures I consent too. I still struggle some days, but struggling is far from unique. I have learnt how being engaged in educational and creative activities are a significant part of who I am. Being creative has also helped me understand my emotions in an accessible way, so I don’t feel defined by the labels my conditions sometimes carry. Just because someone’s voice is louder than yours or because they have more letters after their name, doesn’t mean they’re right. Or, to be more specific, that they are making the right choice for you. Many doctors felt I shouldn’t return to University, but I did, in spite of having to shield in the end. I don’t regret it, because it’s what I wanted to do.
How do you use this learning in your life now?
I definitely trust myself more. If something doesn’t feel right, I do all I can to get it checked over quickly. However, this has been particularly challenging in the last year due to Covid and being unable to wear a mask. I was born at 26 weeks, which for me means I live with Cerebral Palsy, a compromised immune system, chronic pain and multiple lung problems, amongst other conditions. But, instead of dwelling on this story, I am just learning to say this is me. I am also learning to apologise less for things that are out of my control and surround myself with a smaller circle of friends that support me, rather than worrying about making new ones. I take each day as it comes and remind myself how fortunate I am to be well enough to have reclaimed my creativity and be back in education. I don’t normally have a plan that goes beyond a week at a time, because I’ve found that this approach made me obsess over questions regarding treatments changing and potentially not working.
What positive message would you like the reader to go away with?
Your life matters. No matter how complex your health condition(s) are. You have the right to live it the way you want. I was told I’d never go back to University, that I wouldn’t cope, and I did. It was far from easy, especially being away from my family because of Covid, but I’m okay, Whilst there is no cure for any of my conditions, I can honestly say I’m proud of my life. I would also encourage others to be proud of their lives, regardless of the past or their fears about the future. As I mentioned earlier, illness is not a competition. But, If we don’t value ourselves and lift each other up through communication, those who identify as completely healthy or our Doctors, will continue not to hear us. Be proud and say ‘This is me’,