When I read Andrew’s blog before it went public I cried. Mostly, to my surprise, when he talked of those who supported him. He said maybe I could write something - so where do I start? Perhaps sharing my experience might help others in the same situation, or help people to understand that it’s not just the unwell person who suffers.
Andrew, (like most parents I use his ‘Sunday’ name), has had episodes of depression and anxiety for 18 years - more than half his life and nearly a third of mine. The illness is no stranger to our family. His grandfather had major episodes after my mother died and other family members have also suffered. I spent a small amount of time living with my father while he was depressed, but generally, I was too busy being 20, becoming independent and dealing with my own grief. His pain caused me more pain and I had little left to know how to help him, other than just being around when my studies allowed. So for all my adult life I have walked beside anxiety and depression.
The early days
Andrew was living at home during his first experience and it was the first time I had a real responsibility to someone who was suffering depression. As a child, he had often been anxious and worried during episodes of physical illness and he talked about these feelings - a lot of “what ifs”. Maybe it’s relevant that the first symptom of anxiety was physical - nausea and vomiting, around the time of his 16th birthday. We quickly realised it was not a virus. He quickly found being alone difficult, slept badly, wanted to talk at all hours of the day and night and spent waking hours at home on the sofa under a blanket. Eating was difficult, as he often gagged, and then left the table to throw up. We had always been a family who ate together so it was unpleasant for everyone, but important to continue. He was worryingly thin. Many nighttime hours were spent lying beside him listening to his worries, and trying not to fall asleep listening - it wasn’t always interesting! One thing he never found difficult was talking about it. His school year book joked that he was the one “most likely to tell his mother”.
A very supportive GP gave him another outlet. He had the best supportive friends. They never gave up on him, kept him company when we weren’t around, and never stopped asking him to go places - a huge shout out to them all. A visit to a psychologist when he was already beginning to improve reassured as that it would likely be a single episode - little did we know! I do remember not feeling convinced, and felt that my part in the interview was cursory, and unimportant. A deeper exploration of his tendency to ruminate at this stage might have flagged up his OCD much sooner. After a few months he began to improve. His sleep and weight returned and he became a normal teenager, although he spared us a rebellious phase.
Miraculously, during all this, he attended school and passed all his exams well, (if we don’t mention his Psychology Higher). And school never questioned his late arrival at school when he slept in after sleepless nights. Fortunately he often had study periods first thing.
Why? Why him? Why us?
In your worst moments these questions plague you. It was hard not to feel guilty. Was there some genetic component? Had we done something wrong during his childhood? Andy once suggested (tongue in cheek) that it was our liberal parenting!
We often say that all we want for our children is for them to be happy. But I believe that secretly, most of us want them to be doctors or lawyers with a spouse we like, and two attractive and intelligent grandchildren. When things go wrong, this is what we think all other families seem to have. What this has taught me is that what I want most of all is for him not to be depressed.
Reading Andrew’s blog has been painful. Not much in it that I didn’t know, but it makes everything very explicit, and brings back unpleasant memories. Moments when we had to listen, but would rather have been doing something else. Times when you were checking your mobile phone every five minutes in case you missed him and he needed you, but at the same time not wanting it to ring. The anxiety when he didn’t answer his phone. Dreading hearing a monotone voice - still one of the best indicators of his mood. Watching him lose weight and just wondering when it would all get better. And it always has done - sometimes slowly and sometimes very slowly.
Open, but just how open?
Perhaps most importantly, the blog has made me realise that although we have never hidden his illness, we have rarely talked about it explicitly. Our friends and family knew he had problems, but we rarely talked of the daily reality of the whole thing. Family and friends reading this may be shocked at how little they knew.
Our ‘openness’ was limited to saying he was ill, but few dared ask or showed interest in knowing more. I don’t know if this was because doing so would have made it more real, or whether we didn’t want him ‘labelled’ to his future disadvantage. And reliving it in explicit detail is not easy. These last weeks have stirred a lot of emotions. and has led to useful conversations with family and friends. But walking beside it on a daily basis is hard, incredibly hard. You too are scared, anxious, angry, trying to be optimistic, yet fearing the worst.
It’s good to talk
Andrew spoke to myself and his Dad in equal measures. After a while we realised he spoke to me for empathy and Dad for pragmatic help and medical ‘facts’. Oddly, despite the fact that it was hard to listen, it sometimes hurt that he wanted someone else to listen. It was annoying when he told us a medical professional had told him something and he found it useful, but when you’d told him 3 months previously he’d ignored it. And yes, sometimes I wanted to stay pull your socks up, stop this, or that others have problems too.
As I walk beside Andrew, it’s so important to take care of myself. To sometimes say, “no not now”. To make sure I had other things to do. I found it strange, but was grateful that when my father died, Andrew found some reserve and had a short reprieve. This happened at other times, and in your worst moments can make you think he’s just seeking attention.
The worst of times
Perhaps the hardest episode was the fourth one. He had been through such a positive time. He was off antidepressants, was working in a London, finding his feet as a young professional and meeting new friends. He ran and cycled - life looked good. And for us we were finding our feet as newly-partially-retired. And finding time to support our older son through single parenthood. So it was good to think he was finally better.
Oh, that it was so! A little like Andrew, we thought it was just an over-reaction to a brief and failed romance, but he had never told us how relationships were so central to his thoughts. Another lesson was never to assume others think as you do.
He phoned constantly. If he didn’t phone in the morning, we had to phone to wake him, and when he was slow to answer you feared the worst. He was usually in the shower! At his worst we phoned the best of friends to be on standby. I considered renting a flat nearby to support him. Working has always helped - he has almost never taken sick leave, and the routine and activity helps to stop him ruminating. We didn’t want him to have to stop working, although health professionals suggested time off work might help. We disagreed. We are grateful to his colleagues who tolerate his tiredness and lack of sociability when the illness consumes all his energy. And to the great friends and his fiancée who have allowed him to sit on the sofa doing nothing and be totally self-absorbed. I am thankful to my namesake Barbara, as seeing this psychologist, however ‘old school’ was a turning point. It was also shocking - no parent wants to hear the professional opinion that if needed he should report to A&E and ask to see a consultant psychiatrist. And when another says “F***, that must have been awful” when told the story, you wonder if your acceptance has made you complacent or complicit.
The way forward
At any ‘wobble’ we are now quick to say go and get some support, and we are conscious that he needs to be able to recognise the red flags and alarm bells himself. We are sad that our beloved NHS cannot provide what he needs. Faster intervention would help those who are depressed. Social acceptance would help both those with mental illness, and those who help care for them. If it could do this , it might help also economic activity, and simply help people lead happier and more productive lives. And, selfishly, reduce the angst and pain for those walking beside mental illness.
Barbara, as you may have guessed by now, is the dedicated, loving, patient and long-suffering mother of myself and my brother. She is now also blessed with two grandchildren by my brother. She bakes a mean carrot cake. Words will never express how grateful I am to her (and my Dad) for walking beside me on my journey through the darkest corners of my mind. None of us enjoyed it at the time but we're all better off for having done it together.