When my children were younger I had hoped that by the time they turned 17 and 14, I would no longer think my husband was getting the better deal by going out to work every day, while I stayed at home playing homemaker and primary caregiver. I had expected that by then I would have reclaimed my sense of self and would be forging my own way through life, setting the world alight in whatever career I had chosen. Indeed, with a sense of having done my bit, the children becoming more independent, and after over a decade of balancing my need for stimulation with my parental responsibilities, I had in fact already started to re-establish a work life for myself outside of the family home.
But then Emma suddenly got ME at age 14 and I eventually gave up work to become a full-time carer. My days are now, once again, dedicated to looking after her. I manage every aspect of her life, including medical, education, mental health, social. I pore over research, trying to make sure she has the best chance of recovery available to her, and I collect good news stories like a magpie. All the while, fighting hard, not just to get her what she needs, but not to forget my own dreams and aspirations.
During Carers Week (10-16 June), we are reminded that the responsibility of caring for a loved one is often something that only you as the carer and the person you’re caring for fully appreciate (and the latter only if you’re lucky!) Carers in this sense are unpaid and are caring for a family member or friend with illness, disability or who needs support later in life. A child, be it an adult child or a young child, can sometimes have to care for their parent, a reversal of the usual parent-child dynamic. Or a partner has to care for another partner – once a relationship of equals now navigating a disproportionate shift in dependence and companionship.
But being a carer for your own child is a curious thing. To all intents and purposes the balance of care hasn’t changed. I still have a child whom, as her parent, I look after and provide for. When she is sick, I bring her meals in bed, love and support her, and make sure she gets all the help she needs. So really, am I actually seen to be doing anything special at all?
Of course those who live it know it’s hard to fully appreciate just how difficult this is. All parents share the sorrow of missed experiences and lost opportunities, or of an uncertain future for our children. It’s not only parents of children with ME who have these worries and emotions. Every parent wants the best life for their child, and ultimately has to help guide them through the obstacles they meet along the way.
But it’s the weight of additional responsibility that tips the balance. As a parent carer of a child with ME I get very little guidance from experts or otherwise. But at the same time I have the, often intolerable, pressure of having to always make the right choices for Emma, when there is no one to help me with what those are. The threat of involvement from child protection agencies is very real. Many of the issues I’ve experienced over the last 3.5 years is when others, including professionals, perceive that I’m not doing everything I can, or they believe I’m not doing it as well as they think I should be.
Awareness of ME has increased since Emma has been ill, at least in my own sphere of experience. But not, I think, true appreciation of the devastating impact it has on lives, not just for the person who has it, but also the carer. We always say that to truly understand the effect of ME on the patient and their immediate family is to live it 24/7 over a period of years. Because it’s the sheer relentlessness that gets you down, day in day out with just a dull light at the end of the tunnel that flickers occasionally to remind you it’s there.
We tell ourselves, and anyone who will listen, that our children are developing resilience, showing courage and determination. We proudly share how they are coping, for so long with something so difficult and still managing to laugh and smile. But how often are we also talking about ourselves? Vaguely hoping to hear that same praise echoed back to us? For we are also showing strength and resilience and we are still going when there are days when we just want to give up.
Evidence shows those worst affected by loneliness are parent carers looking after disabled children under 18 years old, being nearly ten times lonelier than the general public. My social contact nowadays is mainly via the internet and I gravitate towards people who are sharing my experience. There is huge consolation in finding other people who understand what you’re going through. People who recognise that when I answer OK to “How’s Emma today?” I don’t mean everything is fine, but that it’s just a day where I’m counting my blessings that it’s not worse than yesterday.
In a strange way, my life has started to mirror Emma’s life. I feel I am also living the daily drudge of having ME. Unlike when my children were younger and my social life evolved through mother and toddler groups, I now find myself stuck at home with a child on the verge of adulthood that isn’t well enough to leave the house and requires more help than a 17 year old should. My plans too have to be cancelled at the last-minute because she’s having a bad day. I too can go a whole week without leaving the house except to do a food shop. I too am experiencing pain watching my daughter live a fraction of the life I want her to have. And my future too should have been brighter than the life I’m now living.
This is the reality of life for many parent carers looking after ill or disabled children, often seen as doing little more than is expected of them anyway. It’s not just parents of children with ME. But the purpose of Carers Week is to raise awareness of all unpaid heroes who deserve more recognition and support for what we do every day for our children, family or friends.
My fight is also for ME equality and for this disease to be treated with the respect and priority it deserves, according to its severity and its prevalence. Carers who are looking after people with ME are entitled to the same appreciation and awareness as those who are caring for other people with other conditions and illnesses. Because to understand the disease is to acknowledge the lives of the carers who in their own way are also living with ME every day. And the life we’ve had to forsake in order to do it.