There are over 26 million people in the UK living with at least one long-term physical health condition such as diabetes, heart disease or chronic pain. Each and every one of those people will have a story to tell about how their condition is affecting their life. There are the practical challenges of navigating the health system and attending appointments. They have to learn how to manage their condition, monitoring symptoms, taking medication, and working out how to adapt their life to their new reality.
And then there is the psychological burden, the worry about how they will manage, and the concern about how things will develop in the future. Plus, in some cases, a huge adjustment to their sense of self. "I used to think I was invincible," says Arran, who we spoke to for our new whitepaper, Healthier Minds for Healthier Outcomes in Long-Term Condition Care. When I found out I had type 2 diabetes, I realised that I'm not."
It's not surprising then that being diagnosed with a long-term condition increases the risk of also developing a mental health problem by two to three times.
"My mind went to some really dark places"
Fear is a common response to illness. For some people, fear begins well before their condition is diagnosed. When Rachel developed symptoms of chronic pain it was years before her condition was identified as fibromyalgia. “If somebody can't give you an answer as to why you are feeling these symptoms, you are bound to catastrophise. I was extremely anxious, and my mind went to some really dark places."
For others, the fear is for the future. Many long-term conditions, such as heart failure or chronic obstructive pulmonary disease (COPD), progress over time and can eventually become life-threatening. "If you're not careful you just feel despair," says Andrew who has heart failure. "I try not to think too much about it, but it's hard. I need to stay well for my family, and it worries me that I may not be able to do that."
Natasha, who has type 2 diabetes, shares this concern. If diabetes is poorly managed, it carries the risk of short- and long-term complications. “You do feel the burden. When I first became aware of the consequences of not taking responsibility for managing my diabetes, it was traumatic,” she recalls.
"It's taken away the spontaneity from my life."
The process of being diagnosed with a new health condition can have a dramatic effect on an individual's sense of agency. Suddenly, life becomes dominated by hospital appointments or self-management regimes. This is particularly the case in conditions such as diabetes, which can require monitoring and management of blood sugar levels multiple times a day.
"Diabetes is there in the back of your head all the time," says Natasha. "If I know I'm going somewhere, the first thing I do is make sure that I have my glucose monitor in my bag. I don't even pop to the shop without it. Just like you wouldn’t go out of the house without your shoes."
When Arran was diagnosed with diabetes, he had to cancel travel plans and rethink what he wanted to do. Two years on, he still doesn't feel confident enough to travel. "Even going for a night out with my mates takes a lot of planning," he says. "It’s taken away the spontaneity from my life".
"My world was getting smaller and smaller."
This shift in an individual's life course can result in the fracture of friendships and relationships, just when the person who has been diagnosed with a long-term condition needs the support most. Arran felt that none of his peers understood what he was going through when he was first diagnosed and didn't feel comfortable talking to them.
For Rachel, her symptoms of pain and tiredness, combined with the anxiety associated with her condition, resulted in her adapting her life to avoid situations that could exacerbate her pain. She stayed at home more and stopped doing things that she enjoyed. "I found my life was shrinking; my world was getting smaller and smaller," she recalls.
The resulting social isolation is common among people with long-term conditions who may find it physically difficult to get out and about, or feel different from everyone else when they do. This in itself can have a negative impact on an individual's mental health, further adding to the burden of a long-term condition.
Taking an integrated approach
The relationship between physical and mental health has become an increasing focus for many healthcare systems resulting in a move towards a more holistic approach to care. The SilverCloud® by Amwell® platform has a suite of mental health programmes specifically designed to provide personalised and scalable mental health support to people with range of long-term conditions.
Find out more, including how NHS Scotland is transforming mental health support for people with long-term conditions with SilverCloud® by downloading our new whitepaper now.
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