The relentless bodily symptoms of cystic fibrosis are tough to cope with. But Elly Aylwin-Foster reveals that her bouts of depression are even harder, and urges doctors to treat physical and mental symptoms in tandem.
I’m relieved we are opening up about mental health. Thanks to the Heads Together campaign and the growing reach of Mental Health Awareness Week, which takes place in May each year, it is not as isolating to utter the phrase “I’m depressed” as it once was. But a group of people perhaps most in need of support are struggling to get the right help.
It was a sunny afternoon in Spitalfields. I shared a coffee with a friend, Jameela, as we discussed work, shopping and living with chronic illness. She said something that – at the time – shocked me deeply. “If I had to choose between living with my multiple sclerosis or depression? I’d choose my MS.”
I couldn’t relate, unable to imagine how my mind could do worse to me than my genetic disease. I don't have MS, but cystic fibrosis (CF), which is a life-shortening condition, primarily affecting the lungs and the pancreas. I wager I’m not the only one who, when faced with the diagnosis of an incurable physical illness or depression, would consider depression the lesser evil.
If I’m honest, I had often thought myself ‘resilient’ to the depression and anxiety my doctors screen me for annually as part of my specialist care. That changed after a move to a new city, a job search and two serious chest infections that landed me in hospital twice in three months. Despite many previous hospital admissions, it was the first time I felt unable to cope with what CF was doing to my body. This time, the effect CF had on my mental health was far harder to deal with than the physical symptoms.
The mind-body connection in physical illness has always fascinated me. People living with a chronic condition are three times more likely to be diagnosed with a mental health condition. What's more, anxiety and depression are now thought to be particularly linked to conditions with an inflammatory element like arthritis, neurological disorders such as multiple sclerosis, and hormonal conditions like diabetes.
So why does it matter? Beyond the obvious distress and impact on livelihoods, the medical consequences are alarming. Those with chronic illness and depression are less likely to stick to their treatment, and often have worse physical health outcomes.
When pills aren’t an option
I wanted to find out what treatment had worked for others. I spoke to Katie, a 30-year-old woman living with Ehlers-Danlos syndrome, a disorder in which the body does not produce sufficient collagen, resulting in chronic pain. She also has depression. She is clear on the benefits antidepressants provide for her. “If a pill can help me so much, it proves there was something that needed fixing. It validated my depression in a way nothing else could.”
But what about people who don’t respond to antidepressants or who cannot take them, due to interactions with other medication? I’ve decided not to take them, for now. I already take 40 tablets a day; if I add another, I need to be convinced it’s beneficial.
I’d heard from Jameela about the challenges of accessing community-based support. She waited over three years for group-based talk therapy in her London borough. She laments the fact that, despite having a dedicated MS nurse upon diagnosis of that condition, she did not receive comparable support when diagnosed with depression.
Jameela waited over three years for group-based talk therapy in her London borough.
I also tried community care. After a relatively short three months, I began fortnightly phone calls with a CBT therapist with knowledge of long-term health conditions. My lasting memory of these sessions came when, within 30 seconds of picking up the phone to the friendly sounding therapist, I was asked to score my likelihood of committing suicide. I understood the importance of asking, but no matter how soothing the voice on the other end of the line, it was not a therapeutic experience. I wanted it to work, not least because remote CBT is the most accessible, cost-effective option available. However, I decided to try another path.
While researching, I stumbled across the IMPARTS pilot by King’s College, London. Their admirable vision is to integrate physical and mental health services in chronic illness. It’s reassuring to know that, under their approach, my doctors would not only screen me at every clinic for worsening mental health, but also be trained to discuss those results in the same consultation during which they listen to my chest.
I spoke to Connor, aged 23, a student with Type 1 diabetes. He agrees. “Like a lot of men, I used to feel uncomfortable discussing my mental health and the emotional difficulties of diabetes. It would be great to know I could discuss concerns with my diabetes doctor or nurse, especially as it’s a familiar environment.”
In my case, depression lifted when my symptoms improved and I could work again. Cystic fibrosis is progressive, so I expect to meet depression the future. I’m OK with that. I now understand the hardest physical aspects of my condition are no better or worse than the terror of depression or anxiety.
Preparedness is everything; rigorous mental health treatment should be integrated alongside the management of physical symptoms of disease. It’s time those charged with the care of patients with chronic illnesses understand that.
About the contributors
Elly Aylwin-Foster is a writer, speaker and communications strategist. She was born with the genetic condition cystic fibrosis. Determined to help people think differently about illness, she has written for the Independent and eyeforpharma, and writes a weekly column for Cystic Fibrosis News Today. She is also writing a book exploring how life with chronic illness is viewed beyond the realm of the doctor’s surgery.
John Miers is a cartoonist and academic. His most recent solo comic, ‘So I Guess My Body Pretty Much Hates Me Now‘, explores aspects of being diagnosed, and living, with multiple sclerosis, and was produced as part of a postdoctoral residency at University of the Arts London’s Archives and Special Collections Centre at London College of Communication. He is a lecturer in illustration at Kingston School of Art and visiting lecturer at Central Saint Martins and the Royal College of Art.
Try these next
Research primary source material relating to mental health and the sciences of the mind.
In the 1980s, Jo Spence used photography to capture how politics influences our experience of illness.
Explore illness, death and identity at the ‘Misbehaving Bodies’ exhibition, featuring works by Jo Spence and Oreet Ashery.