The difficulties facing young people living with an endocrine condition in adolescence and young adulthood

Despite large numbers of young people living with a variety of endocrine conditions, including thyroid conditions, pituitary conditions, diabetes, and autoimmune disorders, research is limited on the impact of these on their daily lives. 

During January and March 2020, nine young people all identifying as female aged between 11 and 25 were recruited to our study. They each took part in a single interview about their experiences of diagnosis and treatment as well as how their endocrine disorders had impacted their lives. Three main themes were identified from the interviews, outlined below.

Theme 1: Impact on daily life

One of the key difficulties was the impact their symptoms had on daily life. The young people reported having to manage tiredness, fatigue, and memory problems whilst simultaneously attending school, work, and other activities. There was an essential need for young people and their key supporting adults to be organised with medications and appointments. Maintaining treatment for their conditions and the need to routinely take medication and address symptoms often caused disruption to learning at school, college, or university, or led to disruption at work. This was an ongoing problem that impacted their lives every day that also restricted in the number of extra-curricular activities that they could take part in. 

It was clear that more information was needed to ensure young patients have a good understanding of their own conditions and how to manage them effectively. It was also clear that family and friends also had limited understanding of their respective endocrine disorders. This lack of understanding ranged from what the conditions were, to their management, and extended to ignorance about the impact on daily life. Others’ poor knowledge of their conditions left participants feeling unsupported by those around them, leading to feelings of isolation in some instances. 

Theme 2: The impact of endocrine conditions on relationships

Endocrine conditions were reported to negatively impact the relationships participants could form with their peers. Some of the participants said they could seek support from their peers, whilst others felt marginalised and left out of social groups because of their condition. Discussions also highlighted the young people’s desire to feel connected to their peers and individuals around them although this could be difficult where their condition made them different to their peers. 

“I met my new friends who accepted me more and wanted to know about my condition, I feel more comfortable with them as they’re aware of what’s going on” – Lucy. 

Participants painted a picture of a team of healthcare professionals, particularly doctors and endocrinologists, who were only interested in their physical status and did not pay sufficient attention to the other difficulties that living with the condition caused them. There was no focus on the mental health support that their young patients might require. That said, some participants reported having positive working relationships with their medical professionals; in such cases, the professionals seemed to demonstrate good patient-centred care approaches. These relationships appeared to positively impact the way that the condition was perceived by the young person and these participants seemed to have a more positive attitude about the availability and accessibility of professional support. 

'I currently go every 6 months for check-ups, my consultant always talks directly to me so I’m aware of all my treatment and care...the children’s hospital is amazing, and I wouldn’t want to have treatment anywhere else.' Lucy 

Other participants did not have such positive experiences. This impacted their attitudes and feelings towards the availability of medical support. In addition, this appeared to negatively impact both their sense of personal control and autonomy. 

'My consultant doesn’t listen… how we feel depends nothing on what the levels are. He’s not even open to trying different medication for me. He is really quite dismissive...I feel that sometimes this all gets too much and my doctor isn’t interested in helping me when I say that it is really getting me down.'  Kate

All the young women described their mother as being the key person in their life often devoting a large quantity of their time to ensuring that the young person received the necessary support. Additionally, it was their mother who was credited with explaining the condition to the young person as well as showing them how to administer the necessary medication. Mothers were important in maintaining good physical and psychological wellbeing for the participants. 

Theme 3: An uncertain future 

Uncertainty about their future lives was based on the daily impacts the symptoms and condition management were already having. The limitations they were already experiencing appeared to suggest to the young people that their endocrine condition would restrict their fulfilment in life and the opportunities available to them. Loss of independence was a concern for participants as they moved into their adult lives, with some fearing that they would never be able to experience the level of independence that other young people take for granted.

There was uncertainty about how their conditions might develop and change as the participants aged. This seemed to be a result of healthcare professionals not providing adequate support and information regarding the long-term impact of their conditions, although where information was provided it seemed to be carrying a very negative message about the participants’ future lives. 

'The hospital have told me I will never be able to work to my full potential.' Kate
'When I was first diagnosed obviously it was uncertainty of what the condition does. Now I actually have and I wonder how it is going to affect me.'  Emma

There were key issues about their future life expectations, for example, about the impact of their conditions on their ability to have a family of their own. The young people seemed to have many questions about this that would eventually have to be put to healthcare professionals to answer.

'Is this going to affect me with any of my other health systems [...] if I do have kids? Are they going to have the same issue?' Clare
In conclusion, young women with endocrine conditions experience difficulties with condition management. Their conditions impact on their health which in turn impacts on their educational and/or performance at work or in other areas of life. They report difficulties with forming and maintaining relationships due to their long-term health conditions. Greater information and training are needed for health and education professionals to support the biopsychosocial needs of young women with endocrine conditions. And more research is needed to understand the experiences of boys and young men with endocrine conditions.

Authors: Hannah Godfrey, Yasmin Steven, Dr Sue Jackson, Dr Aly Norman, University of Plymouth