Professionals like Drs Hornabrook and Atkin see themselves as just part of a team that helps people who are suffering chronic diseases. Members of this team extend beyond medical professionals to friends, family and work.
That team is needed, they say, when a patient first receives a diagnosis of a disease like scleroderma, or, say, cancer: “I’m worried or sad about what’s happening to me. I don’t understand,” Dr Hornabrook says. 
Through that process we adjust as human beings to bad news or setbacks in life. People cope differently and sometimes can be overwhelmed by threat to one’s good health.
It’s common to go through a period of shock or stress or upset. He says that’s the human response. But, Dr Hornabrook says, if symptoms persist for days or weeks, you might ask whether there’s an emotional problem that’s complicating the physical illness. Isolated or unsupported people may develop clinical anxiety or depression.
There is a continuum or “seesaw” of emotional distress,” he says. “If the predominance is sad and low, that’s depression. If it’s tense, worry, fear, that’s anxiety.” Each often overlaps and often responds to the similar medicines e.g. antidepressants work for both anxiety and depression.
Dr Hornabrook, a psychiatrist, says it’s unusual for him to see a scleroderma patient as it’s rare for the disease to attack the central nervous system, unlike other connective tissue disorders. The symptoms for scleroderma are more like the psychological sense that I’m coping with illness and symptoms: pain and discomfort.
But scleroderma is chronic so the doctor says it’s not uncommon for patients to report sadness and depression but he points out that life itself can bring that on – it’s not uncommon.
From a psychiatric point of view, he says a condition like scleroderma can bring on anxiety, depression, hostility and somatization (distress at bodily symptoms). On top of that, we all change as we age and we can get physically sicker as a result.
Dr Hornabrook pointed out that some medicines themselves may cause emotional symptoms. He cites steroids, which alter both appetite and mood, and can cause insomnia. Codeine and morphine can affect your thinking and memory. Those are the sorts of things he pays attention to when he sees patients, which, rather than adding medication, might benefit from reduction depending.
Coping with chronic disease
Having canvassed the effects that a chronic disease like scleroderma can inflict on someone, Dr Atkin concentrated on coping. She summarised the emotional changes that can affect someone newly diagnosed and which can continue: “Whenever change occurs we have a response to that and we have an emotional reaction,” she says. Common reactions include anger, grieving for your previous life, denial, depression, fear and anxiety.
Dr Atkin described the typical reactions that some follow upon diagnosis. It begins with shock and denial, can move to anger, frustration and even shame and at its deepest, it can cause depression and detachment.
As patients learn to adapt to change and cope, they learn to share their experiences and find meaning to what’s happened. They can accept the change and find how to live with it. Returning to meaningful life, she says patients can feel empowered, secure in their situation and regain their self esteem.
But, returning to meaningful life doesn’t mean returning to how life was. The acceptance stage means accepting a life that’s lived in a new normal. It’s important to realise she says, that this cycle of down and then up is a natural response to all life’s changes, not just chronic disease.
Ground yourself
Dr Atkin advises that you ground yourself, throw out an anchor. Work to mitigate the worst effects:
- Sleep – Address changed sleep patterns – whether too much, or lack of. Your GP can help with this
- Diet – Pay attention to what you eat, and how often. Avoid poor nutrition
- Safety – Feel secure in your environment as you process your emotions
- Structure – Follow a daily routine or structure so that you might try to wake at the same time each day or maintain regular family mealtimes
- Exercise – Ensure you get your body moving regularly
- Daylight – Keep regular exposure to daylight to keep your day/night rhythms working.
- Personal – Socialise, keep your circle of friends and maintain personal interests.
Mindfulness
Perhaps the most interesting lesson that Dr Atkin left the seminar with is to look up a topic called mindfulness. She says our minds wander off into the past, grieving for things we’ve lost, or into the future, anxiously wondering about what’s going to happen.
“In order to get through a difficult period it’s important as much as possible to be in the now,” she says. Mindfulness connects us with the now, rather than all the thoughts going on in our head. “When you’re doing something, be in that experience because you’ll never get that time back again.”
She took the audience through some exercises to ‘living in the now’, as she calls it. She says it takes perseverance but mindfulness can be learned with practice.
Google ‘mindfulness’. There are even smart phone apps.