Will life change?

Illnesses that occur in childhood and adolescence will impact life in different ways, depending on how sick the child is. Daily routines may change, nutritional needs may alter, energy levels may fluctuate and treatment plans may have to be taken into consideration and managed carefully.

Children with an autoinflammatory disease may find they can’t do everything their friends can do. They may also have to put up with pain and go to therapy sessions and hospital appointments, or even spend prolonged periods in hospital. This can be upsetting, unsettling, and frustrating and lead to feelings of being ‘different’ or standing out from the crowd. These feelings are not always easy to deal with at any age – how well children handle these often depends on how old or mature they are, and comes down to their personality.

As well as noticing changes to what can or can’t be done, the other thing that may change is the ability to make plans for the future. Often it’s difficult to plan ahead because you can’t predict the severity of the symptoms tomorrow, the next day, the next week, or even the next year. Holiday plans, or even just plans to go out for dinner, may have to be put on hold or decided upon at the last minute. You have to learn to live for the moment and make the most of each day at a time.

The best approach to dealing with change is to foster a caring and open environment and try to find support for your child and yourself, such as finding people who are going through something similar that they/you can talk to and spend time with. Although difficult, it is also important to try to surround yourself with people who can make an effort to understand your situation, even if they are not living with something similar. It’s also vital to try to make every day seem as normal as possible for your child – let them see their friends, go for a walk, read, watch TV or whatever makes them happy.

Where to seek additional support

If a member of your family has an autoinflammatory condition, you may need additional support. There may be times when the practicalities of everyday life, such as financial struggles and treatment strategies, feel like too much to bear, or you might be looking for support for you or your child’s emotional needs. There is support available for all sorts of the challenges (e.g. treatment support, help with symptoms, support options for children) you may be facing, or may face in the future. Good places to start include your own or your child’s doctor, the hospital department you visit, social services and health insurance providers. You can also seek help from child protection authorities. Friends and family who know you and your needs very well can be an invaluable source of support. And last, but by no means least, you can turn to rare disease support groups who will understand what you are going through.

Telling others about living with autoinflammatory disease

If your child has an autoinflammatory disease, it’s likely you’ll be wondering how to explain to friends, relatives, your child’s nursery or school teachers, and classmates what is actually going on – why your child is tired, withdrawn, unable to take part in usual activities or absent from school and family get-togethers.

The people involved in your child’s life will, whether you like it or not, have an impact on your child and shape your child’s perception of themselves and the world around them. You don’t want them to make assumptions or treat your child harshly for not doing things / getting involved in activities they cannot do through no fault of their own, and in doing so damage your child’s self-esteem. The more informed people are, the less likely it is that they will treat your child inappropriately, and so the easier it will be to carry on with daily routines and ensure your child is relaxed and confident. So, where do you start? How can you begin to explain? Here are some helpful hints:

  • Be open and honest
  • Start at the beginning - explain when and how your child was diagnosed with autoinflammatory disease, what his/her symptoms are and how they affect your child
  • Explain that your child’s condition changes from day to day. Sometimes they are well and other times they are not – consideration and flexibility is needed
  • Highlight that even though your child often looks ok, this doesn’t mean he/she always feels ok – it’s good to check with them (quietly though so as not to draw attention to your child and make them feel different)
  • Emphasise that your child is still a child and needs to be treated in a similar way to any other child to help maintain their self-esteem
    • The difference is that sometimes they might not be able to do everything other children do (run, play outside, or ride bikes) and they might get ill more often than other children and may need rest or medical treatment
  • Ask people for understanding without judgement

Also don’t underestimate how those around you may perceive you. If your friends, relatives or colleagues don’t understand or are not aware of what you are experiencing, they might be wondering why you have withdrawn, or are not as available as you have been in the past for social activities or even work. The way your friends, relatives, and colleagues react can also impact your personal wellbeing. For more information and advice on managing your own relationships, check out the 'You’ section.

Kids Corner

Want to help your child understand their illness ? Why not visit Kids Corner with your child and read Paula and Tim's explanation of autoinflammatory disease and their experience of attending school and after school activities with their condition.

Life with Periodic Fevers

December 2015 - GLDEIM/ACZ885/0044