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What is ‘living’ with Cushing’s Syndrome?
Cushing’s syndrome has a significant impact on every patient’s life. This is because Cushing’s symptoms can change not only what patients see in the mirror, but how they feel inside.
"Even getting dressed has become so difficult…"– Patient
‘Normal’ feels different for everyone and can change over time
The varied and complex nature of Cushing’s symptoms means they can affect patients’ social and family relationships, as well as career pathways and future plans. This can create a major social and mental burden for patients, as well as demanding physical changes. These effects can also change over time depending on the symptoms and the comorbidities experienced.6
Given the complexity of Cushing’s syndrome, it can be daunting to take control of managing this disease on one’s own. Tracking symptoms and staying informed on treatment options and next steps, however, is a vital and worthwhile effort, as it provides the best chance of improving patient experience and quality of life (QoL).1,13
Understanding the burden of living with Cushing’s Syndrome
People with Cushing’s Syndrome tend to find certain aspects of the disease more burdensome than others. Many report that fatigue, muscle weakness and weight gain have the most significant impact on their QoL.1 A recent study reported that the following percentage of patients with Cushing’s experience symptoms such as depression (94%), loss of physical strength (93%), and pain (83%), which they say take a significant toll.14
Tools like symptom trackers and diaries can be helpful for keeping a consistent record of signs and symptoms.
Working to lessen the daily burden of Cushing’s Syndrome
Doctors may use different types of questionnaires to gauge a patient’s mental and physical wellbeing, which they will evaluate to assess patient QoL. Questions aim to look at how Cushing’s syndrome affects each part of a patient’s life, looking for problems or concerns in a patient’s mental health, family and romantic relationships, physical capacities, and more.14
This is why it is vital for patients and doctors to communicate openly and regularly to help identify worsening symptoms and work to lessen their strain on patients’ lives. It can be helpful when dealing with complex symptoms and comorbidities to encourage patients to involve their wider support network, including friends and family, to understand the daily burdens of Cushing’s syndrome.
By having open conversations with their supporters and doctors, patients can lessen the burden of managing their disease all by themselves. Sharing symptom changes and goals can also help patients to investigate the options available to them for treatment and support, which can assist them in making difficult and complicated decisions.15
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The impact of Cushing’s Syndrome on one person can be very different to the next. Monitoring your disease journey and keeping your physician and family updated may be a helpful way to see changes over time.
Help your family and friends to better understand Cushing’s syndrome by sharing this website and encouraging them to keep up with the conversation on social media by following #ThisCushing on Twitter and LinkedIn.