Surprisingly, the hardest part of coping with an incurable, chronic condition or life-threatening disease, is not the illness itself, but the way those we love react to it.
Over and over, we read or hear how marvellous family and friends are in helping with adversity. How many magazines blaze the headlines: ‘I couldn’t have made it without my mum/dad/significant other?’ Dozens.
The less palatable truth is that not everyone will find that support when they need it. While listening to a programme about young cancer sufferers on Woman’s Hour, Radio 4, I discovered that, contrary to popular belief those closest to us can be utterly useless when it comes to life going awry. Laugh and the world laughs with you; cry and you’re all alone.
I was horrified by the tales of these young women whose friends and relatives effectively dumped them once they shared their diagnosis. Part of me wanted to believe that these were especially difficult women, but listening to their stories proved that this was not the case. To a (wo)man, they were articulate and delightful, stoic in their acceptance that sometimes people aren’t up to the job of caring for those facing misfortune.
Though a little ashamed to admit it, this cheered me up too. Having first being diagnosed with MS and then cancer, I got to witness a wide spectrum of responses from the borderline indifferent to the angelic.
With the MS, I understood that people might be bemused. It is a complex and unpredictable disease. It is also invisible. Since I routinely turned up to events quite cheerfully, it was easy to imagine I was fine. They had not witnessed me lying for hours incapable of doing anything nor had a clue about the mental turmoil one goes through envisaging a future that might see you not just wheelchair bound but utterly incapacitated or even dead.
When I was diagnosed with an aggressive form of breast cancer three years later, I assumed that this would alert those less supportive ones that I really was ill. It did not.
If anything, the sheer magnitude of the diagnosis meant that there were people who effectively ghosted me rather than deal with this new reality. This included, to my dismay, many who I had assumed I could rely upon.
Facing it alone
My husband has been a rock through all of this, but he has to work and so is out of the house most of the day. My sons live abroad, so can hardly be expected to pop round. But I do have a number of people close by, but that did not mean they came to see me. On the contrary, if anything, this particular group stayed away more than usual.
Being sick, when everyone else is well, is incredibly isolating – not simply because you can’t join in all the time. Illness invariably means spending long hours at home in bed or resting, hours that are filled with fears for the future.
Being sick and ignored by those you always assumed would support you adds yet another layer of pain. In some ways, their lack of care hurt much more than the intrusive and often distressing procedures that I had to go through. Those lasted only a short time and healed. These hurts lasted months and have left terrible scars.
At first, I experienced confusion. Did they not realise my predicament? With both diagnoses, I was absolutely honest about what they meant, while trying to take the most optimistic path. Yet still, I felt that my explanations were treated as a kind of demand for sympathy, an exaggeration. One person even went so far as to suggest that chemo wasn’t really that bad, since her friends had all had it and managed fine! There is not much one can say to that. With all things, one person’s experience in no way reflects another’s. For me, chemo was the worst experience I have ever gone through but radiotherapy was a doddle, though many others find the reverse. No-one’s diagnosis or treatment is identical and it is wise to let the person suffering tell you how they are experiencing things rather than making assumptions.
Dismissal of the seriousness of your condition has two effects: first it diminishes you and makes you question your own reality and second it makes you feel ashamed. Am I such a terrible person that those I love can’t find time for me? Am I really that unimportant? If I died, would they care?
This post has been incredibly difficult to write. At the back of my head, little voices keep telling me that I should not be calling attention to this. It is my fault. Something in me makes them behave that way.
But I need to share this. Years of meditation and extensive therapy have helped me to understand that really, I have nothing to do with it. (Though I don’t always believe that!) In truth, most of us prefer to plunge our heads deep into the sand rather than face what is unpleasant or downright terrifying. At some level, we are still children and it is tempting to close our eyes and ignore anything bad in the hope that it will disappear. But when someone saves themselves in such a way, they sacrifice the one who is already suffering. Life isn’t fair and is often cruel, but that is just how it is. And despite their scariness, these testing times also give the greatest opportunity to grow and to love fully.
Whilst my circumstances have cost me dear in terms of certain relationships, it has also brought the most incredible love and kindness – often from the most unexpected quarters. My true friends were there to take me to appointments; sit with me while the poisonous chemo ran through my veins; laughed and hugged me. Friends who live miles away constantly emailed or wrote with little quirky stories and tales of family adventures, restoring a sense of normality to life. And this blanket of affection kept me warm and safe from the icy blasts of depression. Sharing life with these people made it all the more precious.
So, if this post is to have meaning, it is to encourage you to step way outside your comfort zone and be there for those who need you. They may not be any fun for a while; they may not even survive. But what you can give is more precious than anything you can buy. Unfortunately, love cannot heal us physically, but it can make even the most terrible times bearable.
