Written by Rachel Burkinshaw, OTW camper parent and blogger at 7yearstodiagnosis

“…when one person in the family has a chronic illness, the whole family has it…”  – Jamie-Lynn Sigler 

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself. 

For the last eight years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can, despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines. 

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye. She is, without a shadow of a doubt, the unsung hero in our family story. 

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.  

From the interruption of frequent hospital appointments to badly-timed admissions over her birthday two years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too. 

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.   

If you would like to share your story with us, please get in contact media@otw.org.uk