If ever there was a year when the world tuned in to mental health awareness, I feel like this was the year. As I type even, I am following the hashtag #thiscanhappen18 on Twitter, the UK’s largest corporate mental health conference tackling health issues in the workplace.
In just the past month or so there has been both Mental Health Awareness Day and Stress Awareness Day where my timeline exploded with people discussing how mental health issues have affected them and how it is finally time to start being open and talking about this.
And for the first time really, I was able to truly empathise.
It is no newsflash that caring for a child with disabilities carries challenges. And I don’t want to bleat on about that too much as caring for Marigold is largely a privilege that has given me a huge sense of pride and purpose. But it is, as I have said many times before, a fight and a fight that never stops. Just this year it has been fighting for her EHCP, for a blue badge, and now we have the pleasure that is reapplying for her DLA. There has been a school transition to manage, which has gone brilliantly, so am I totally thankful, but has required a huge amount of admin and meeting time. Keeping on top of therapy and appointments is the full-time job of a medical PA, development centres and hospitals involve an hour’s rage-filled drive through heavy London traffic in rush hour for appointments that often run behind – do stop me if I have said this before!
And then there’s the day-to-day. Like a lot of children with special needs, Marigold struggles with sleeping. She does not like it. She does not like to go to sleep FULL STOP. A full night’s sleep is a very rare and precious thing and when it does happen, I think I could probably rule the country. Marigold also needs help with all aspects of self-care from dressing to toileting. And that’s just the way it is. Although she is doing so well trying to be more independent, there is often an ugly morning scene as I desperately try to wrestle her into her coat and pushchair whilst running late: cue maximum cortisol levels.
Marigold is making amazing progress with her communication, but she is still what you would class as non-verbal. And as possibly one of the most verbose people I know, that is a real challenge for me. Trying to communicate via sign and symbols requires a retuning of your communication system, a real slow down in how you communicate, and when you are living life at a million miles an hour with a thousand browsers open, it is hard to do that.
Against this backdrop of care for my unique daughter, I still desperately want to WORK. I want to work more than ever! I want to work as it validates me as a professional, because it challenges me intellectually, because having built up a career over twenty years, I care about what I do and I can’t give that up. And whilst it might be easier not to, as is often pointed out to me, that force comes from ME and is one to be reckoned with. Hence launching as a freelance marketing consultant this year and putting a whole new set of pressures on myself. Because contrary to popular belief, freelancing is NOT just sitting in bed with your lap top eating Hob Nobs. It is running your own business. And whilst liberating and flexible, it is also hard, hard work if you want it to work properly.
Finally, there is something that happens to many of us who have children with disabilities. We become champions for disability awareness. There is a burning desire in us to drive change, to make the world a better place, a more inclusive place, to campaign, to change perceptions. I feel so passionately about this. I often think I was given Marigold for a reason. Because I have a voice (yes, it is a very loud voice) and I have the tools and the resources to really campaign for better equality for our children with special needs, for inclusion, for visibility, for their place in society to be secure and respected. This year Marigold was lucky enough to become part of Zebedee Management, a talent agency who specialise in diverse representation, and this has been an amazing experience and insight into the world of disabled talent, what has been achieved and what we still have to achieve.
Basically, if I may paraphrase Freddy Mercury, I want it all. I want it all. And I want it now.
I want to be a mother, carer, therapist, credible professional and disability champion and I want to do all of those things to the very best of my ability. I split my day between numerous personas, one minute discussing a programme to help with fine motor skills, a wheelchair referral, the next minute trying to devise a marketing strategy, then trying to cram in something like this blog. Every bit of headspace is taken up with something. And then what happens with that tiny bit of remaining headspace? Well obviously, that is used up for worry! Oh, how we love to worry as parent of children with special needs. Are they happy at school? How would they tell us if they weren’t? When will we have to review school options? Will we have to move out of London? But then what about all her medical and therapeutic care? Will she ever be able to communicate verbally? How independent will she be? And the box that must NOT be opened…what happens when we are no longer around?
So it is not surprising that a few months ago, I found myself right at the bottom of a spiral and quite unable to fight my way out of it. And it was horrible, frightening and exhausting in a way I had never experienced before.
The verdict: stress. The very challenging time of Marigold’s school transition combined with an intense work period alongside not sleeping and eating and drinking badly all took it toll. Once identified, it was, luckily for me, fairly easy to take steps, dietary and life-style to try and get in back under control. So it is insanely healthy eating for me (soon to be totally abandoned for Christmas gluttony), limited booze (with the odd retro night), no caffeine (saddest thing in the world has been giving up coffees, but it does nothing for the anxiety), lots of fresh air. And the hardest thing: having to say NO. I see a fantastic counsellor who is helping me with feelings of overwhelm. We go for walks around the common and she says things like “For God’s sake Helen do NOT get a dog, your life is complicated and busy enough!” She helps me self-check enormously. For anyone feeling overwhelmed with life, I would truly recommend having someone like this to support.
Caregiver syndrome or caregiver stress is a real thing. Look it up in Wikipedia. It is a “condition that strongly manifests exhaustion, anger, rage or guilt from unrelieved caring for a chronically ill patient.” Carers of those with disabilities are so vulnerable to mental health issues, to depression, exhaustion and stress, yet there is so little recognition and support in so many respects. As always, I can see green shoots. I know in the corporate world for instance, there are some businesses who are establishing disability and carer’s networks to provide support for those with or caring for those with disabilities. But there is so much more to be done.
Someone who has done so much to raise awareness around the mental well-being of those caring for children with special needs is my friend Laura, who has a daughter with Jacobsen Syndrome, a rare chromosome disorder. Against a backdrop of hospital admissions, sickness and services dysfunction, Laura did her MSc in Digital Journalism and created her dissertation on this very subject, smashing it out the park with a Distinction no less. “Under Siege: parent carers and the battle for mental well-being” is a multimedia piece. You can read and listen to it here:
I am so thrilled that Laura’s research has quite rightly been shortlisted at the Mind Media Awards, awards that recognise and celebrate the best possible representations of mental health across TV, radio, print and online. And I will be more than a little bit chuffed to attend the awards themselves this week on Thursday night with Laura. To be recognised for this, to have a spotlight shone on the issue of the mental health of those caring for those with disabilities, this is something we need to keep raising awareness around so we can drive change and provide support. Because too many people find themselves at the bottom of that spiral and unable to get out.
And a possible selfie with a famous celebrity on the night itself? Well that would be the icing on the cake!
Across the UK today, 6.5 million people are carers, supporting a loved one who is older, disabled or seriously ill. UK Carers UK exists to support and listen to carers, to give you expert information and advice and to champion your rights as a carer. www.carersuk.org
Unique is the rare chromosome disorder charity providing support, friendship and knowledge for those affected by rare chromosome disorders. www.rarechromo.co.uk
Zebedee Management is specialist talent agency passionate about redefining the perception of beauty, disability and diversity. www.zebedeemanagement.co.uk
The Mind Media Awards are held every year to recognise and celebrate the best possible representations of mental health across TV, radio, print and online. You can check out Laura’s shortlisting here: https://www.mind.org.uk/news-campaigns/mind-media-awards/2018-shortlist-student-journalist/