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A parent's perspective.

Following on from our last blog, Netta's mother has shared her experience of parenting children with chronic illnesses. Read more below.

I’m in the unusual position of having two girls with Chronic Fatigue Syndrome and autoimmune activity which leads to chronic fatigue and pain, and have walked this path with them for the past 7 years along with their dad and our son. Both girls were diagnosed within three months of each other despite being 5 years apart in age, and it affects every single aspect of their lives.   

As a parent of unwell children, the challenges are real; how do we keep their spirits up when their bodies are not playing ball? How do we encourage them that it won’t always be like this when we have no idea if that’s true? How do we support them to manage any energy they do have without fussing or being overly protective? How do we grieve and process our own emotions without them being affected?  

But let’s backtrack. The news that your child has CFS (with or without autoimmune activity) is challenging - a life altering illness with no end date, no medicine, and no idea how their future will pan out. I remember a knot the size of my fist forming in my stomach which lasted for a whole year and comes and goes still, I went off my food and sleep was broken. I cried (and at times I still do) – I felt the sun would never shine again (it did). I remember describing myself as a bird who wanted to fledge her chicks but instead, they fell from the nest and crashed straight to the ground.  

As their friends were expanding their horizons, going out, flourishing in studies, and making plans for next steps they were both stuck. Chronic fatigue sucks joy, vitality and shrinks horizons - it made the home a place of illness and resultant sadness. No more ‘normal’ family life – whatever normal means for each family. For us it meant an end to walking to school, walking the dog together, swimming that they loved was off limits, cycling became too much, and camping which was how we spent every holiday stopped. Hanging out with their friends shrivelled. It felt the rug was pulled out from under our whole family and our son in the middle suffered too – it was very hard for him was to watch his sisters ill and he walked to school alone. Family mealtimes changed in content and setting; food was often brought to their beds, and we worked really hard to implement a whole-foods plant-based diet, which over the years has, without a shadow of a doubt, helped enormously. 

Then came the loss of A levels for the elder one and for the younger one, school consisted of late starts, many days missed altogether and no ability to keep up. The school very quickly made it clear that she wasn’t at the centre of their care but rather their ‘data set’ was being affected as her grades were dropping and homework was not completed (or started). They refused to see the big picture. Meetings were set up where my husband and I were told nothing could be done and it was our responsibility to get her in despite her illness - failure to do so could result in fining. Fighting for support for your ill child is so distressing and totally wrong. The school were good thankfully with a child who lost their leg due to sepsis, but because autoimmunity and CFS are invisible we were ultimately not believed. CFS is unseen, misunderstood and in all contexts our girls have had to repeatedly try to advocate for themselves with adults who often fail to understand and fail to read up on CFS. Take travelling on the tube- they get ‘tutted at’ if they sit on the floor when no chairs are available because they are young and look OK.  CFS is often described as having 5 spoons of energy per day– once given away none are left but young people may LOOK fine despite bone weary, muscle wobbly, head pounding fatigue with brain fog to boot. 

Supporting a child who is poorly is both a tragedy and a joy. No-one imagines their children will become seriously ill and the feeling of sadness and guilt can be enormous- did we do anything wrong? Did they inherit it from me? What has caused it? Will our son get it too? What has happened to my life – I signed up to be a mum not a nurse, teacher, therapist, or taxi service – and now I feel bad about my frustration - and will they ever be able to hold down a job and live independently? Hospital tests and endless rounds of consultants is not how you’d choose to spend your time together!  

But fast forward 7 years and we have made it through to smoother waters. The elder one managed to get 2 A levels and found a university (LIS- London Interdisciplinary School) that accepts on interview not A levels. They were the ONLY university in the UK who would even consider her without 3 A Levels, despite what she’d been through. This is what makes you weep and shake your fist in rage at the injustice of it all. So, she started University at 21 and she has a personal plan, a welfare champion and despite rarely making the lectures before 11am she is doing well. She is in so many ways flourishing – she is well read, fiercely funny, and wonderful company. She has friends who get it, get her and funnily enough several have autoimmune and CFS. She makes their lives better and she advocates for herself. She still has crashes and dips but largely knows how to recoup her energy and what works. She is, and will, make her chosen meaningful mark in the world her way, and good on her! One of her extended personal projects has been on radical rest and I’m excited to see the changes she may create for herself and others because she has navigated significant challenges.  

Our younger daughter was taught her GCSEs by us at home through Covid – an impossible task if we hadn’t had a specially matched Fresh Start Education Specialist for 2 years to tackle the maths and science. A weekly burst of joy and support, a specialist who knew what they were doing, what was needed, and how much she was capable of. On the days when she was too poorly to work, they worked on self-esteem and the room was full of laughter. She even wrote and notified the school what levels our daughter was working at in Maths (no idea if they read it but she wrote!). She passed her GCSEs, and we cried tears of relief and joy – school was over. 

She moved onto College which has not only supported a flexible timetables but has re-inflated her sense of self. She has worked hard to get her life in balance and usually manages to save energy for socialising and friendships, but crashes still happen more than we’d like. As I write she is in bed on day 8 after a common cold. She is loving, funny and kind and guess what, she too has friends at college who have CFS, some with autoimmunity and some not. She is quirky and creative and a delight. Both the girls have got stronger baselines and are resilient emotionally in a way I’d never have thought possible. Despite the unruly rebellious nature of CFS that can up-end plans in a heartbeat, both girls are flexible and emotionally open about how it really is for them. 

And our son? He adores them both and continues to work through the impact on himself of their illness and our family’s collective pain. He is loving, empathetic and uncompromising in his support of them both and sees past CFS to them in their entirety. 

Tips and ideas to remember that I have found helpful: 

  • You are NOT alone. Find friends who will champion, love you and be positive. My sister and best friends have been unswervingly supportive, always hopeful yet allowing me to cry and let it out. 
  • Find another thing for you if you can- a walk alone with music, join a class (I took up pottery which helped a great deal), anything at all that acts as a valve for you to let in something good and nourishing. 
  • Accept illness and CFS in the family will change you. I asked a friend if I’d be OK (right after the diagnosis for our 2nd daughter) and he said, ‘Yes you will be OK, but you will be different’. That is true. I am different and 7 years on I can see that I am stronger, I don’t track their illness with my emotions so much, I am no longer surprised by it, and we laugh, we laugh a great deal. I am wider shouldered and deeply passionate about CFS and young people. But I carry a scar and that will always be there.   
  • You know your child, don’t let school or any setting diminish what is going on. My girls are able at times to mask it, because they have no choice (e.g., at a family wedding they felt ill but carried on regardless and paid for it the next day).  
  • Never do for your child what they can and should do for themselves BUT respond when needed. So, I know when they need their food in bed and when they don’t, I know how many of the spoons they have left by the look on their faces and the strength in their voices.  
  • Get therapy if you can- this was a game changer. As a close family we needed to vent elsewhere and not re-traumatise each other. I had a short NHS course; we got our son coaching and the girls had NHS psychotherapy.  
  • Don’t try and problem solve it. I spent years trying to work out what caused it, what went wrong and then eventually I let that go and I instead try to just roll with it with compassion (as my husband was always much better at!). Day by day, accepting it for what it is, but NOT accepting it for what it ISN’T – it isn’t their identity, it isn’t the thing that makes our family ‘us’, it isn’t hopeless. We are, as my friend said, OK, but we are different. 
  • Help them laugh, eat really, really well, reduce stress, prioritise good sleep and add in some low impact exercise such as yoga, swimming, and walking to move the limbic system around the body. 
  • And lastly remember that time doesn’t stand still. The girls, on good days, can wild swim, cycle with the electric bike, walk the dog and enjoy their lives fully, whilst accepting CFS is an unwelcome houseguest and can sap their energy in any uninvited instant. 

Rachie is a parent of former Fresh Start in Education student, Netta, who wrote the previous blog.

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