Life with a chronic illness can be unpredictable and emotionally draining. Families like Jemma Patton’s need their friends more than ever.
I had no idea our lives would pan out like this. She was an average kid until around the age of nine, when some annoying-yet-manageable niggles turned into complex health problems and a chronic pain condition.
Unfortunately there’s no single cause or clear diagnosis that sums up Bonnie’s health problems. She’s under the care of four different departments at Great Ormond Street hospital and has required frequent, sometimes lengthy, hospital admissions and four surgeries so far. This year we have spent a total of 12 weeks in hospital, and we average around one outpatient appointment a week.
Bonnie has not been able to attend school in 16 months and I, thankfully, work at home. We are a close little unit. Planning any sort of life around a chronic condition is a huge challenge. Her health and pain levels are unpredictable, so planning ahead is difficult. We often leave events early; we frequently cancel at the last minute. So often it’s just us, our family of three, just hanging in there, just coping.
None of this is normal. We know that, but for now, and possibly for a long time to come, this is OUR normal.
People expect illness to be finite. It should come with an end date. People should get better, especially kids. But the truth is that for us, and for many families just like us, chronic illness can last for years, or even for a lifetime.
“Chronic illness has no guidelines, no rulebook. It makes people uncomfortable; they feel guilty that they and their kids are healthy and happy. They run out of words to ask how Bonnie is, or how we are coping.”
During Bonnie’s illness we’ve met families affected by a huge array of chronic illnesses. Conditions such as juvenile arthritis, cerebral palsy, diabetes, hypermobility, Ehlers-Danlos syndrome, chronic pain syndrome, Crohn’s disease, plus various genetic disorders. One of the huge benefits of a hospital like Great Ormond Street is that you are surrounded by families with sick kids, and, crazy though that sounds, there is some comfort in being surrounded by people who just ‘get it’.
When your child is ill you initially look to your family and friends for support – both emotionally and practically. To begin with this was absolutely the case. Friends brought us dinners and treats for Bonnie, they were valuable sounding boards, they mopped up tears, they made coffee, they were there for us.
But after years of living like this, many of our friendships have dwindled, both for Bonnie and for us. Girls who I had imagined she would be friends with forever have simply walked away when things got tough. The mum of one emailed me to suggest her daughter needed ‘time out’ from their friendship.
People tire of illness. They want positive news and uplifting stories, and when you have nothing positive to contribute they lose interest. But our sorrow and stress isn’t contagious.
Lorna is mum to a 14-year-old girl with cerebral palsy and chronic bowel and bladder disorders. She explains: “I think the medical bubble we live in, the suffering we see, the highs and lows, means that we live different lives to our friends. It’s very difficult to go out with friends and talk about their work problems, etc, when your head is full of worry and exhaustion. The continuous juggling of medical appointments, treatments, care and paperwork leaves only the tiniest remains of your happy, healthy, funny former self that they used to know.”
Back in the 1960s a family counsellor called Simon Olshansky came up with the term ‘chronic sorrow’. His work was with parents of kids with developmental and learning problems, but these days the term is also used for parents of a child with chronic illness.
Olshansky observed that the sorrow parents experience as they observe their child missing out on milestones, the worry about their future, mixed in with their natural love and pride for their child, has a profound effect on the emotional wellbeing of parents – quite literally leaving them chronically sad, a lot of the time.
“None of this is normal. We know that, but for now, and possibly for a long time to come, this is OUR normal.”
When you are emotionally drained; from dealing with someone in pain, from endless nights in hospital, from talking to doctors, from battling with schools, it takes a while to notice that friendships have dwindled. We become isolated, lonely and all consumed by the negativity of illness. We don’t have the time or the energy to reach out to friends, but we do need them to reach out to us.
Death is terrifying and devastating, but it has rituals that can help us deal with it. We send cards, we buy flowers, we attend funerals, we know how to pay our respects. Chronic illness has no guidelines, no rulebook. It makes people uncomfortable; they feel guilty that they and their kids are healthy and happy. They run out of words to ask how Bonnie is, or how we are coping.
Sabina, who has a child with complex health needs, told me: “I see certain friends less now because they didn’t try to help, understand or be there for us, or because they were completely insensitive and brushed our issues aside as if they were nothing. That really hurt. The whole journey has made me re-evaluate life, friendships and relationships.”
But it’s not all bad. The friends who are still beside us are the very best we could hope for. Many of them have been through their own traumas, which has perhaps given them a better understanding of what we’re dealing with. Bonnie’s two best friends are, quite simply, superstars. They visit her in hospital and don’t notice the machines, drips and beeps.
I joined a closed Facebook groups for families with similar conditions, I cannot even begin to describe how much it helps to talk to people who are living through similar issues as you. These groups are hugely helpful, but it’s not the same as the support you need from your friends – the sort of friends who knew you before you were the parents of a chronically ill child.
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Jemma Patton is a freelance writer and editor who specialises in the world of medical aesthetics. She lives in London with two cats who don’t get on, and her husband and daughter, who do.