I’ve often heard it said, “chronic disease affects the whole family,” and I agree that this is true. Each family member plays a role in how we support our child with a rare autoinflammatory disease. But what about young siblings?
I remember vividly the moment we found out we were pregnant again with our second child. In fact, it was at Sick Kids Hospital during Daniel’s admission. I was constantly feeling ill and nauseous and assumed it was the anxiety of what we were going through until one of the nurses suggested I take a pregnancy test. Sure enough, it was positive. At that time the discussion of a possible bone marrow transplant for Daniel in the future was on the table, so with the blessing of the doctors and support from our community we were able to bank our baby’s cord blood as insurance for the future. She was and is a ray of light in what was a very dark time. In fact, so much so that our daughter’s middle name is Hope—named for her brother because we know that no matter what he faces in life, she is always there for him, walking beside him in his journey.
She is still a little girl—only five years old—and we have recently noticed some trends over the last couple years in how she speaks about her brother. So, we have had a lot more conversations with her about autoinflammatory diseases and what Daniel faces at the hospital and at home.
I wanted to share with you what that looks like for us, and 5 Tips that maybe will help you to talk to your children about your child’s autoinflammatory condition.
When Daniel’s arthritis was especially bad, and he would have trouble walking or he was moving slowly, she would always want to help. But we did notice that she would find her own ailment to complain about as well—sometimes it was a stomach ache, or a sore finger, but it would often correspond with her brother’s pain. It was hard at times, to pull ourselves away from him to take time to focus on her ‘pain,’ but necessary knowing that it wasn’t so much the physical pain she was experiencing but empathetic pain and the need to be acknowledged. Autoinflammatory diseases like Daniel’s often have symptoms that are much less visible, like arthritis, rash, and fever—unless you are trained to look for them when you see an individual with these diseases you may not even recognize they have a disability.
In our experience—when a disease is rare and the future is unknown—it’s hard to explain these things to an adult, much less to explain it to another child. For us, words like autoinflammatory, arthritis, and macrophages have been a part of everyday conversations in our home since the day our daughter was born. Now that she is finally at an age where she is beginning to understand we have noticed a few more questions that have come up. We are blessed that Daniel’s health doesn’t in anyway affect his cognitive ability and so he is always more than happy to help us answer any of her questions, never making her feel silly for asking them.
Daniel has had to have regular trips to hospital for years, and each year we make at least one annual trip to Toronto. As a result we try to include one fun activity while we are there to try and make it special and not all about his disease, since the days are usually filled with procedures, bloodwork and clinic appointments. To try and relieve stress for the entire family, we often incorporate a trip to the museum, or the zoo or Ripley’s aquarium (pre-COVID) and we always include our daughter in these trips. She will often come to the hospital and sometimes even need to give blood for genetics testing. In those cases, she will gladly hold out her arm exclaiming, “if Daniel can do it, I can be brave like him too.” She might spend time in the hospital play area while we meet with doctors or she may have to wait at the hotel with my husband while Daniel and I go in for appointments, but she is always there waiting for us, often with a smile and a special picture or a special treat to lift our spirits after a long day.
When Daniel does his injections at home, our daughter will often ask if she can be in the room, if he wanted her to hold his hand or if she can play a distracting video game with him. We never say no unless he really didn’t want her there for a particular reason, so seeing her brother get nightly injections has never been shocking to her. She would often calmly and quietly support him, asking him if it hurts or if he was ok.
We also have taken advantage of the amazing Child Life Specialists at our local children’s hospital. We were able to arrange a day that both Daniel and his sister went in together to meet with the Child Life Staff. They were able to take some time to explain to both of them what happens at the hospital when Daniel comes, what it looks like when he needs to get an IV for infusions, and even gave them a tour of different areas of the hospital so she can see where her brother needs to come for treatment. This was a big part of answering her questions and helping her see what a typical day at the hospital looks like for him. She has even come a few times to his infusions to sit with him and play games and colour (pre-COVID) so she has always felt like a big part of his journey.
It’s so important to us to include both our children in Daniel’s rare journey. Because it does affect the whole family, rare siblings see their siblings struggle; they feel emotions like guilt, anger, sadness and empathy and they need to be able to process these emotions too.
So some of the ways we as a family have helped our ‘healthy’ child understand her brother’s autoinflammatory disease are:
- Acknowledge their ‘pain’—real or otherwise. It often stems from a place of emotion and a desire to be seen and heard.
- Don’t be afraid to answer their questions. Explain in simple terms but don’t make up words or try and find other ways to explain away things. Be honest and open.
- Give them a role to play. Our daughter finds pleasure in playing the supportive role. She never complains about bloodwork and is always happy to help.
- Don’t hide the hard stuff. If your chronic disease child is open to having treatments done in front of their sibling, than let them see it and be a part of it. This is your family’s normal and sometimes it’s easier to face the hard stuff together.
- Let them step into their sibling’s shoes for a day. Take them with you to the hospital, introduce them to Child Life and give them an opportunity in a safe space to ask questions and get answers so they can be more empathetic and understanding.
Because being a brother and sister means always being there for each other.