A while back I texted my mum at 22:00 to see if she would be interested in writing a short something about having a child with a chronic illness. The next morning I woke up and mum had already sent me this article! I had to take some of the excessive praise out, but besides that this is what she wrote. All I can say is that it made me cry a little, and that I have the best family in the world.
I think, if you were to ask most parents what we want for our children, we will tell you that we just want them to be happy and healthy – everything else is a bonus. So when things are not ‘okay’ – whatever that means, in reality – there is almost always a lot of emotional readjustment to be done on the part of the parents – and, inevitably, (because it seems that humans can do very little without it!) a lot of guilt.
But what if everything is okay at the start – and then suddenly it is not. That is exactly what happens when your child develops a chronic illness, like ME/CFS. And it takes a very different kind of adjustment – because no-one ever really talks about the ‘millions missing’, so it is the last thing you expect, and because there is no clear point from which to begin your adjustment. Equally, because your friends and family don’t really know whether to believe in ‘that stuff’ anyway, they sort of stop asking what your child is doing – because they don’t really know what to say. And as a result, your chronically ill child just disappears from view – and with them, all the things their parents hoped for them begin to fade away too: all the plans, dreams and expectations, all the talk of successful careers, travel, even romance, suddenly has to be put on hold – or terminated – and you are never sure which because there is no set pattern for how this thing will work out.
An energetic life force
As a child, Kat was a ridiculously high-functioning and energetic life force. She was never happier than when she was doing something: sport, music, ballet, reading, school… and she did them all to a good, or in some cases excellent, level – and refused to miss a single session or event – even if it meant setting her alarm for 5am to complete outstanding homework or fit in a missed training session before school! One of the things you often hear about people who develop ME/CFS, is that they were high-level perfectionists when they were young, but maybe that is just a myth – and it is certainly not something you want parents to be thinking, at the time, when everything is so positive.
To be fair, school life was not without its trials, as she was a child who knew her own mind and had a strong sense of her own identity; and she liked academia – none of which made her particularly popular with the ‘cool crew’ – meaning that she occasionally ended up clashing with equally strong but opposing personalities, particularly when standing up, vocally, for various of the underdogs of school life. Again, you hear people suggest that being ‘bullied’ may be another commonality in people who go on to develop ME/CFS. Without adequate research, honestly, who knows?
From the age of nine, Kat’s overriding passion was kayaking, and she put her heart, body and soul into it, joining adult training sessions when the junior ones were ‘too easy’, and competing in sprint, marathon and endurance races almost every weekend. She won several national titles and her tenacity also won her considerable respect amongst the racing fraternity, as she tumbled out of boats into icy water and refused to give up, or raced in freezing conditions, just to complete a race series.
In fact, at that point, being her mother was sometimes a trial, for the simple reason that I was often accused of pushing her – when, in reality, she was the one dragging me! On one memorable occasion, I was standing on a sleet-swept canal-side, watching her line up for a 20-mile race, and I overheard someone say, ‘What kind of parent would force such a young child out on the water in weather like this?’ My response was to wander away and ponder the early morning ‘discussion’ that had ended up with us being here, during which I had tried my utmost to dissuade her from racing at all!
As Kat got older, and GCSEs loomed, we would often discuss her workload and try to encourage her to drop a few activities and give herself some more time – but she loved everything she did so could never decide. I sometimes wonder whether, had I been more firm, it might have prevented her from getting sick. There is no factual evidence to suggest it would, but like I say, guilt makes the parental world go round!
Almost as predicted, she got 7 A*s, 4 As and a distinction in her exams. What was probably equally predictable, but saddened me a lot, was that she was genuinely a little disappointed by these results, as the school had made it clear to her, over several years, that anything less than straight A*s would be ‘letting herself down’… – and she had come to internalise that expectation. As parents, however, we were over the moon and, as she began her A’levels, following a work experience stint as an environmental scientist, there was talk of Oxbridge and a plethora of possible illustrious futures which we eagerly mulled over. She became a keen debater, passed her driving test (to be fair, she wasn’t a natural at first!), took on a cleaning job to fund her social life, and trained harder than ever at kayaking, in the hope of getting international selection. What could possibly go wrong?
Things started to change
Honestly, I don’t know. I wish I did. But things started to change. Towards the end of Year 12, Kat became very unwell, ending up in hospital with a leaky appendix which needed removing – and taking several months to recover fully – much longer than predicted. Shortly afterwards, she had a virus (oh yeah, you know the ‘just a virus’ thing!) … and she didn’t seem to be able to get better from that, either. Despite repeated visits to the doctor, it was mostly blamed on her age – which it may well have been. It is only later than you begin to dissect it over and over, looking for an answer as to what went awry. By this time, she had missed a considerable amount of school – which was regularly pointed out to her and to us, by useful letters, pointing out that ‘your daughter has missed X% of school time and it will impact on her learning’ – like we hadn’t noticed and weren’t already deeply anxious on every level, thanks!
Needless to say, her AS exams did not go so well, and we were all (unreasonably, to be honest) quite disappointed – as our expectations were still set so high. However, she determined to catch up and retake in Year 13, also informing us that she did not want to do Oxbridge, as it was too elitist, nor UCAS, as it was too mainstream – instead, she wanted to study abroad.
As year 13 came and went, again, she had a number of unexplained illnesses which, at the time, were labelled as ‘post-viral fatigue’. By now she had a place at Amsterdam University College, to study Liberal Arts and Sciences but, as it was largely awarded based on interviews, essays, and predicted grades, she was able to relax slightly and took off to spend her post-A‘level summer, volunteering in Sri Lanka.
Unsurprisingly, she didn’t get her straight As – and I knew she was disappointed. I also knew though, that it was ridiculous to be disappointed with five AS exams and three A2s under her belt! We all knew how hard she had tried to tough it out to get those results, in the face of so much illness, and she deserved the accolade for that. But communicating this to ‘other people’ is a funny thing! I wanted them to understand and acknowledge what she had been through – because I was genuinely proud of her – but I was also slightly angry that by mentioning it, I seemed to be making excuses for her results. She had gained a reputation as a high achiever over several years, and – although many people were genuinely sympathetic, it seemed that some were almost gloating – and that really hurt. How much of this was in my head, I don’t know, but it felt, from some quarters, as if we almost had it coming, and they were gloating that our ‘perfect’ child had toppled from her pedestal. This feeling has persisted, as her illness has made things more and more difficult for her – and I have been torn between defending her against their negative inferences – and sodding them for their unworthiness!
All this aside, a summer of traveling had done much to restore her health, and Kat was ready to begin her Uni adventure in Amsterdam. We drove her out and stayed to settle her into her hall of residence – and then left her to it. We had always been very close, and I missed her deeply, but she seemed to be making some great friends, having fun and working hard, so for a while, all seemed settled again.
Kat’s own recent blog has already detailed the intense pressure put on them by the university and the effects of that on her health: the over-long terms, constant examinations, and refusal to accept any absences – even for genuine illness – with the penalty being failure of the course and expulsion. I was aware, from regular phone calls, that she was often ill – in some cases with serious fevers for several days, and, being so far away, I was deeply anxious and felt helpless to support her. The final straw for me, should have been when she came home for Christmas 2014, with a high fever and with her lips, mouth and throat covered in blisters and sores. She couldn’t even drink water and spent Christmas in bed, too weak to move. I wonder now whether I could have changed things, ME-wise, if I had intervened, and helped her defer her place for a year so she could recoup, but she was an adult by then, with her own life and priorities, so she went back, and dragged herself through her final year – incredibly, passing her degree with a ‘Cum Laude’ (a First) – and then collapsing, exhausted into bed. As her friends began to find themselves again, the following year, she remained constantly ill and unable to hold down even the most mundane job without feeling exhausted.
It is really hard, particularly as a parent, to realise you have missed something really obvious and potentially allowed you child to suffer as a consequence. I had seen a couple of friends with ME, I had taught students with ME, but I had failed to notice the progressive descent into chronic illness of my own child.
The battles of chronic illness
The months that followed were a constant battle for both of us. Firstly, there was the battle with the medical profession – and a stream of derisive or powerless doctors, who either did not believe her, belittled her symptoms, and tried to force inappropriate treatments on her – or simply had nothing to offer. I was constantly forced out of my comfort zone, to play the role of tigress, and defend my cub in these meetings – and then spend days with her, trying to undo the damage they had inflicted by invalidating her and causing her to question, for the millionth time, whether she was really sick at all, or ‘just mental’. One medical professional even suggested that it sounded to her as if I was funding my unemployed daughter so that she could live the party lifestyle in Amsterdam. That is the only time I have ever lost my temper in a medical appointment!
My second battle was with myself. I understood why Kat needed to prove she could be something, and not just lie around or come home to me (she had a life, a lovely partner and a fab group of friends) – but I was constantly anxious that she should not overdo things or put herself in positions where she might endanger herself or make herself sicker (travelling alone, living in a squat, being an activist, etc). In hindsight, she did all of those things, but they helped her to become what she is now and to accept her illness, so I do not regret letting her have her freedom to grow – even though it cost me at the time.
And although we tried really hard not to mention it too often, the elephant in the room during this time was always money. As it became more and more obvious that this was ME/CFS, with or without a diagnosis, the practicalities of funding a second home – even a really grotty studenty one! – and paying for Kat’s keep, were not without consequences for our work-life decisions and, at times, our wellbeing. When she was travelling, despite the air fares, etc, she was generally cheaper to keep – and she tried to do little bits of work here and there, but I was conscious that she was stressing about it too – and not looking after herself properly, in order to remain cheaper to keep!
Luckily, we have always had a really close and open relationship, and there is very little we can’t talk about in our family, so as time went on, we had to bring the elephant out of the shadows and acknowledge and accept the mutual guilt that had become part of our relationship. Kat knew she couldn’t survive without our financial support, and was riddled with guilt every time she treated herself to a coffee, or caught a tram instead of trying to walk somewhere; we constantly felt guilty that we were letting her down because we couldn’t afford to give her more money for a decent room, for medicines and treatments etc. As with everything, talk makes a massive, positive difference – acknowledging, laughing and crying about it meant that, even though the guilt was still there, we knew it was silly and could try and move on from it. Hugging helps too!
So where does this all end? We eventually heard about and were able to fund a course of sessions at the Chronic Fatigue Centre in Amsterdam, where Kat was finally given an actual clinical diagnosis of Chronic Fatigue and Postural Orthostatic Tachycardia Syndrome POTs. Sadly, a diagnosis is not a cure, or even partway to one, as there has been so little research into either. However, although, as a family, we had never doubted that there was something wrong, it was a relief for Kat to finally have her illness validated – and for us to be able to look the doubting Thomases in the eye and tell them that, yes, she does have a ‘thing’ – and, no, it was never in her head. She has also found a GP, in the UK, who made a point of telling her that he believed her – and apologised about his lack of resource, and for the way the NHS has treated her. His empathy and validation meant the earth to both of us (we cried all the way home!). She has discovered that regular osteopathy, with a practitioner who is actively researching ME/CFS on her behalf, has helped her to manage her constant headaches; and I guess, as time has passed, she – and all of us – have just got better at understanding and learning to live with her illness.
The other huge thing that really helped, was finding a way to give Kat some financial security and independence. Again, as a parent, you budget to look after your offspring until they spring off, somewhere around their early/mid-twenties, if not before – and from then on, you are more or less free, pending disaster (or, more recently, sadly, pandemic). Having a grown-up child with a chronic illness which is not recognised by the state for social support nor by people in general, means that you worry about long-term security – especially when you are gone and they have to make it on their own. We wanted to be sure that Kat could never find herself homeless or sofa surfing in later life, so we took a decision, as a family, to raise the money and buy an apartment in Amsterdam (not as grand as it sounds!), which she is now funding through letting out rooms. These means, no matter what, she has a roof over her head, and a feeling of financial independence. It has also helped us both with the love-guilt cycle and, now that she is safely ensconced in her own place, complete with therapy cat (!), a huge amount of stress has been lifted from all of us. She has a wonderfully supportive husband, and flat mates, and friends – and, even though at the moment she is shielding – and in another country, a long way from here – I know she is as safe as she can reasonably be.
Lessons I have learned
So, to finish, if I were to be asked how parents can best support their children when they have/ or suspect they have an invisible illness, I think there are a few key things I have learned:
1. Believe them, and your own instincts: if you know there is something wrong, there probably is.
2. Validate their experience, actively listen to what they tell you and empathise with how they are feeling – even if you don’t fully understand: otherwise you will make assumptions and this will lead to frustration and anxiety for both of you.
3. Acknowledge the guilt on both sides: talk about it and think around it for creative ways that you can address and alleviate it.
4. Find a GP who is ME/CFS-aware, or willing to learn: if your current GP is dismissive, ask to see another – and keep pushing until you find one who will support you. (Note: do not agree to try Graded Exercise Therapy: it has been discredited (see one of Kat’s previous blogs – and can do serious harm). CBT, however, is harmless and it may be useful, even if not directly!
5. Involve the school at an early stage (if your child is still at school): again make sure that the person with whom you deal is sympathetic and understands the nature of invisible illness – and that they educate their colleagues and your child’s friends.
6. Ignore naysayers and doubters: if they won’t listen, they are not worth it!
7. Communicate with each other: there will be good days and bad days, but you can learn so much about how your relationship needs to work, just by asking and explaining – that way you will support rather than annoy each other!
8. Make sure they know you are always there for them, but accept their need for independence too: occasionally, Kat has needed to come home to be cared for, because she has been too sick to look after herself; sometimes she needs to talk, rant, or have a hug… – but equally, she wants to make her own way so, when she is ready, she takes herself off again and I try not to hold her back.
9. Accept that this is a life-long illness and act/plan accordingly: people do get better and miracles can happen (as I mentioned before, hope springs eternal!), but if you continually kick against it, you will hurt everyone concerned and miss making the most out of what you have now.
10. Be proud of them and acknowledge what they achieve every day: living with chronic illness is tough – they may deserve more praise for getting up and dressed in the morning than an able-bodied person who runs a marathon.
11. Become an ambassador for ME/CFS: now you understand, shout about it, so other people hear about it too – you can be the voice they do not have, to fight for the research and recognition they are too sick to demand.
12. Love and accept each other unconditionally: step away from the could have beens and the maybes and remember that being a mum is the greatest gift in the world and your kid is the best!
Advice for parents supporting children with ME/CFS
