While it’s vital to look after your child’s physical health when they are living with a rare autoinflammatory disease, it’s also important to look after their emotional and mental wellbeing.
Children affected by rare conditions such as TRAPS, FMF, SJIA and HIDS, may sometimes miss out on things like school, sports and seeing friends, causing them to feel down and upset. Symptoms such as fever and joint pain may cause them to feel irritated, tired and maybe even angry. Seeing these emotions in your child can be worrying but they are common in many children with chronic illnesses.
As well as the indirect ways that SJIA and its symptoms can affect a child’s mood, it may be possible that the condition is having a direct effect on their emotions as well.
Research shows that certain parts of the inflammatory response, called pro-inflammatory cytokines, can affect behaviour and mood when they reach the brain. It’s also been shown that depressive symptoms in people with autoinflammatory diseases can be reduced by reducing levels of certain inflammatory cytokines. This shows that there could be a relationship between autoinflammatory conditions and mood.
Here are three key ways you can help look after your child’s wellbeing:
1) Provide emotional support:
Children can find it hard to share their feelings. They haven’t yet learnt how to express themselves properly, so instead may become moody or perhaps even aggressive when they can’t make themselves understood. Providing them with emotional support, helping them to explain how they are feeling and patiently listening to them, will in turn help you understand how to help them feel better with the support of their doctor if needed.
It may be a good idea to consult with a therapist on how to help your child learn to better communicate their feelings about their condition and what emotions they experience during a flare. The therapist can then also provide you and your child with practical ways to deal with these feelings and to help your child feel as supported as possible.
2) Help your child understand:
The more your child understands about why they are unwell and what causes their symptoms, the better. Teaching them about their condition can help them to understand that there will be times when their symptoms will be worse and they won’t be able to go to school or see friends, but also that their flares will pass and that if they take their medication and look after themselves, they should feel better. Explore Kid’s Corner to find resources which can help you have conversations with your child about their disease.
3) Approach family, friends and school teachers:
Once your child understands more about their condition, they (with your help if needed) can explain it to their friends. This could help your child to feel more included and help their peers to be more understanding when they interact with your child.
As well as your child’s friends, it’s a good idea to talk to a number of other people involved in your child’s life, to make sure they (and you!) have all the support you need. Sometimes your child may not want to come directly to you with how they are feeling. On some occasions, they may instead feel more comfortable talking to a grandparent, a sibling, a family friend or a school teacher. Have open conversations with those people most involved in your child’s life, to make sure they understand what your child is going through and how they can help.
These three approaches, combined with medical care, can help your child stay happy and live well with their condition.
Remember to seek professional help if you have any serious concerns about your child’s mental and emotional wellbeing.
1) Dantzer, R. and Kelley, K. (2007). Twenty years of research on cytokine-induced sickness behavior. Brain, Behavior, and Immunity, 21(2), pp.153-160
2) Raison, C., Rutherford, R., Woolwine, B., Shuo, C., Schettler, P., Drake, D., Haroon, E. and Miller, A. (2013). A Randomized Controlled Trial of the Tumor Necrosis Factor Antagonist Infliximab for Treatment-Resistant Depression. JAMA Psychiatry, 70(1), p.31.(https://jamanetwork.com/journals/jamapsychiatry/fullarticle/1356541)
3) nhs.uk. (2018). Depression in children and teenagers. [online] Available at:
[Accessed 19 Nov. 2018].