TREND community and RYR- mental health survey results

During September to March, TREND community worked collaboratively with RARE Youth Revolution to conduct a survey into the effects rare disease has on a young person’s mental health.

This survey was run in the hope that more information could be gathered surrounding the correlation between rare disease and mental health so we could gain valuable insights into how the community can better support young people living with rare disease.

Unlike the previous survey, participants were not prompted with predefined answers to the questions. Instead, young respondents were given a blank space to write their own answers, so they were able to detail their own unique experience.

These insights were then anonymised, and the data extracted, to create word clouds. Words were weighted according to their significance. i.e., the largest words in said word clouds represent the most used words in answer to the question.

Here is what you told us.

Would you say your mental health has been affected by having a rare disease?: That majority of young people answered this question by saying that, in some way or another, their mental had been affected. Several mental health conditions were mentioned by name in the participant’s answers, including “depression” and “OCD” (Obsessive Compulsive Disorder). But the most common mental health issue caused by rare disease seems to be “anxiety”, which was featured heavily.

How would you describe your mood, and does it impact your everyday life and ability to function at school, work, or socially?: Our young people most frequently mentioned words that would negatively impact mood - words such as anxiety, depression, pain, and struggle, suggesting that rare disease can have a largely negative impact on a young person's mood.

Yet again the words “anxiety” and “depression” were prevalent. But also used were the words “concentration”, “motivation”, “impact”, “struggle”, and “sadness”. The use of these words may certainly indicate a vastly negative impact on a young’s person’s everyday life and social interactions caused by a decline in their mood or mental health resulting from managing their rare condition.

What are the primary triggers to your mental health/anxiety that make it worse?: It is clear from the voice of our young people that there are a lot of triggers involved in managing a young person’s physical health. Words such as “pain”, “health”, “headaches” and “fatigue” were used to answer this question. This is not to say that external triggers do not also factor in, as is evident by the size of the words “stress”, “environments”, “hospitals”.

What strategies do you use to help manage your mental health?" Music was the most frequently used word in answer to this question. Music can be employed as a coping mechanism amongst young people when it comes to managing their mental health, and it is clear that it has therapeutic value for our community.

Music, and other strategies that are most common among the answers, can act as distractions or an escape from reality. This can be supported by the fact that other distractions were mentioned in respondent’s answers, including art, computer games (our columnist Ben uses online gaming as distraction), YouTube, and books.

Do you think there is a correlation between having a bad day physically with symptoms and having a bad mental health day?: The responses to this question largely suggested that there is indeed a correlation between physical and mental health. Words such as "pain" and "symptoms" were most common in responses to this question.

We also know from answers to a previous question that bad physical health can act as a trigger for bad mental health, which means there is a likely a strong correlation between a decline in physical health and a drop in mental health.

Our partnership between our young audience and TREND in conducting these surveys is to empower action, and our aim is that by sharing these insights we can aid other organisations to reflect this learning in their programmes and support systems for young people.

By understanding more about what mental health issues young people face, and the triggers we can help alleviate the effects that they have on a young person’s life. It is our hope that the findings of this survey allow us to better raise awareness of these issues and combat them, and we look forward to reflecting this on our future projects and resources.

If you would like to share with us your self-care and coping strategies for maintaining good mental health, we would love to hear from you. Likewise, if you run services or programmes which you feel can be of benefit to our RARE Youth community, we would love to hear from you.

You can contact our youth coordinator James Brooks by emailing

The full PDF of results from this study can be found on our resources page here.

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