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#apaperaday: Perspectives on and Experiences With Bullying From Youth With Neuromuscular Conditions

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Perspectives on and Experiences With Bullying From Youth With Neuromuscular Conditions

A pick about bullying in patients with neuromuscular diseases by Chatur et al in Journal of Child Neurology. Doi 10.1177/08830738241257985. Sadly patients with visible physical disabilities are more likely to be bullied.

Bullying can be physical or verbal or happen online. Authors define it as a behavioral manifestation of perceived social devaluation. This has impact on the people who are bullied with regards to mental health and quality of life.

Authors here wanted to study the perspective and impact and response to bullying specifically in patients with a neuromuscular disease. For this they conducted semi structured interviews with 14 patients, aged 10-18. All participants had experienced stigma based bullying.

Some patients indicated that they were not only bullied due to their disability but also because eg English was not their first language. Patients realized that often bullying came from others who did not understand their disability. Also sometimes they saw it as unintentional.

Eg not being asked to join playing during breaks or birthday parties as the perception was that they could not participate. Access sometimes also was a problem. Eg no seats to allow them to rest at play areas. Participants did persevere and found coping mechanisms.

They did this by focusing on positive things and asking trusted friends and family members for support. Knowing that bullying can come from fear or frustration helped as well. Some also became less sensitive with time. However other indicated it still hurt and had an impact.

Solutions to prevent and reduce bullying were explaining the condition and its impact and how others could help. Raising awareness in school was seen as a good thing to allow support of other pupils and teachers, and to reduce fear of not understanding the condition with bullies.

Authors stress that while the patients provided tools to cope and prevent, the burden of this is not only on them. Also the people who bully should be called out and coached. Finally clinicians should be aware that patients can be bullied and if so offer physiological support.

I think it is very sad that neuromuscular disease patients are bullied (or that anyone is for that matter). However reading how these patients cope with this on top of their disease only makes me more humble and more in awe.