This time last year we published guest blogs by Alex and Sian, who are children living with ME. They discussed their experiences with ME and how they managed it alongside their education.
There are also challenges for the parents of these children, which is why we created a section of our website specifically for parents.
One parent has written a blog for us, detailing their experiences and what they would say to health professionals working with children who have ME. This is a very powerful blog and may be upsetting to read, but it is important for physiotherapists to understand how their actions can cause distress to both their patients and their families.
We extend our thanks to this parent for taking the time to share their story with us.
Our MP hit the nail on the head when he said “ME is a diagnosis you don’t want to have". We had at that point been fighting for an education for our daughter and were desperate for support. It was crippling us financially having to fund this ourselves. This was only one of many things we had to fight for after she became unwell many years before. The prevailing years were tough and marred by the constant disbelief and insinuation that we were to blame for her illness and that she frankly was just not trying hard enough. The loss of income, and life, for us all is not something I’d wish on anyone. The impact it had on my mental health as well as our daughter is unforgivable. We sat throughout countless appointments with a paediatrician, silenced by the fear of Fabricated Induced Illness allegations. My daughter was set targets that if she didn't achieve were met with disappointment and tales of other patients, who unlike her, were more motivated. They also did not want to hear that she had not managed her hour in school that particular week and this was verbalised. In addition, it was expected that she have contact with a friend once a week. The friend eventually disappeared, as they all did, because she wasn’t able to do the activities they enjoyed. I tried to explain to them away from my child that she actually didn’t have any friends but still it was insisted that she see a friend once a week. My child had learnt to smile nod and agree with the questioning. She had a physio weekly which we readily agreed to. However, this proved to be another huge waste of time. Our child was very compliant and did most things they asked even if she was struggling.
After each session she would not be able to stand and her body would shake uncontrollably for hours with her sobbing as it was causing pain.
We contacted the service who had a team meeting and decided that I wasn't being positive enough because I said she felt terrible. It was suggested I use more positive language around her, and that there was no way this was caused by the exercises (even though the only time it happened was shortly after the physio). The meeting floored her for a week - by this, I mean that she was unable to walk at all and as the week went on she could only shuffle along on her bottom. There is so much more I could say but this is a snap shot of the nightmare of having an ME diagnosis and the support and treatment that was on offer. We planned to get our daughter discharged as quickly as we could but had to wait until she was old enough to speak for herself. Our child's life has improved since then but only because we have paid privately for all treatment and tests. She is now at university and doing well but it has left a huge impact on our lives, both financially and emotionally. To clarify, the shaking was POTS tremors and after seeing a leading specialist on POTS we know that our child’s life would have been very different if this had been diagnosed when she was 13. She is on the correct medication now and it has transformed her life. Her private ME consultant believed her and this enabled her to talk openly about her symptoms and the impact they have on her. The consultant quickly realised she had symptoms of POTS and was instrumental in helping transform her life. Please, please listen to these children. Our daughter was bright and full of zest for life . Tried every activity, was extremely sociable and never missed school even when she probably should have.
Test for co- morbidities, don't just assume that there is only one thing going on. Very rarely this is the case. Our child has EDS, POTS, ME and blood results that needed weekly injections and supplements for the others. By the age of 15 / 16 this child was a shell of her former self and was mute around anyone other than family, to add to all her other symptoms.
We remember feeling so hopeful when she was first diagnosed that someone was going to help. Sadly, we believe they caused more harm to our child and we have to live with the guilt that we were in some way complicit as we let it happen. It’s been ten years of her life from initial viral infection to some semblance of normality! But it didn’t need to be 10 years! Be that one who lifts your head above the parapet. Be the one who makes that decision. Be the one who makes life a little more tolerable. Be the one who listens and believes. Please.
Reading the parent's account and those of the 2 school children was heart-breaking. However they all finally found a way of pacing and coping and I really hope this information can be passed on to many more people. From Sue, a physiotherapist retired because of ME!