The things people travelling through health and disability journeys want their friends to know.
Many parents of children with special needs or complex health conditions will say that their family is, in many ways, just like anyone else’s. But there are fundamental parts of their experiences that are different and not fully understood. Not even by the friends and family members who are closest to them.
We spoke to parents in the Friendili community to see what they’d most like to tell their friends and families about their lives. This is what they said.
1. Please don’t avoid me
‘If you don’t know what to say or how to react, please don’t avoid me. I’d rather you were honest and told me you don’t know what to say, and just give me a hug, or tell me you’ll be there for me. I’m not expecting a solution, but it’s nice to know you’re still there.’
2. Please don’t forget me
‘Please don’t stop inviting me to things. Just because I can’t come 99% of the time, I still like to know I’m in your thoughts and that you want me around. If I could be there, I would.’
3. Can we talk about something ‘normal?’
‘Even though I have a child with complex needs, I don’t always want to talk about the intricacies of their health, or when their next check-up is. Sometimes, it’d be nice to just talk about what’s on TV!’
‘Sometimes I just want to talk about normal things. I love my child to pieces, but I still need a break, just like every other parent. It’d be great to just go for a brew every now and then, and set the world to rights like we used to.’
4. Sometimes, it’s the little things that help
‘You don’t always need to be there physically. Just knowing you’re there if I need you really helps. Even if you just send me a text with a smiley face every now and again, or send me a quick message to know you’re thinking of me, it really helps lift me up.’
‘There have been times when we’re stuck in the hospital paying outrageous prices for horrible food – feeling frazzled, tired, and on a knife’s edge. It would be so nice if you’d bring us some of your home-cooked leftovers that we can microwave!’
5. Help me avoid awkward conversations
‘When you have a child with an immune disorder, it can be really difficult to stick to plans. If we’ve arranged a playdate outside and it’s raining, it would really help take the pressure off me if you suggested an indoor activity instead, before I have to rearrange.’
‘I’m really worried about my child getting sick and ending up back in hospital. If you’re ill, or even have a sniffle, please don’t arrange to see us. It might sound extreme, but it is a matter of life and death. Please don’t make me feel awkward by having to ask you to leave.’
6. Understand my silence
‘There are times when everything is so intense with my child that I just don’t have the capacity to reply to messages. I want you to know that it’s nothing personal, it’s just there is only so much I can focus on. Please understand that my silence is not because I don’t want to speak to you, or that I don’t care about you – it’s because I only have so much to give at any one time.’
7. Do some research
‘I understand that there’s a lot to learn about my child’s condition. But rather than asking me everything about it, I’d really appreciate it if you did a bit of reading around it online. This would help you understand, and means I don’t have to go through every little detail, which makes me anxious and upset.’
‘I like it when you ask about my son, it shows you care. But please pay attention to my body language, because sometimes it all gets a bit much and I can’t talk about things anymore.’
8. Help us get out!
‘It’s really difficult for us to find a babysitter trained in NG feeding and basic life support. That means my husband and I can never go out or have time to focus on our marriage. It would help us so much if you took the time to learn these things. The training really doesn’t take long, but it would mean we could have a date night every now and then.’
‘I’m so tired out with everything going on with my child that sometimes I lack the energy or motivation to do anything – even if I have the opportunity to. Please encourage me to get out and about, I know I’ll feel better when I’m actually out with you!’
9. Please don’t pity us
‘Although you might find it hard to understand, pity reinforces isolation and is frustrating. I’m not amazing, or a hero. I’m just a mum doing the best I can in a world I found myself thrust into.’
10. Please treat my child normally
‘I want my child to feel part of society just like any other child. Please treat them this way and encourage friendships with your children just as you would with anyone else. Yes, they might not be able to go to the trampoline park or to somewhere busy, but there are other activities that we CAN do together.’
11. Help me swim to shore
‘There are times when I feel like I am failing as a parent and drowning in a sea of desperation. Sometimes, I just need someone to help me through the storm, to see clearly again. Please try and recognise when I’m at this point, and help me swim to shore.’
12. I’m not a superhero
‘People say, “I couldn’t do what you do”. The truth is, we do it because we have to. Although our journey might be different, we love and take care of our families just like you do.’
13. Please don’t be ‘sorry’ about my son’s special needs
‘Please don’t be sorry that my son has Down Syndrome. He is a beautiful, amazing, and loving little boy and this is what we should celebrate. Saying you’re sorry puts the focus on his diagnosis and the challenges he might have, when he is so much more than that!’
14. I want to celebrate your child’s successes, but I find it hard
‘It can be difficult for me to see my friends with healthy children doing things that I’d love my daughter to be able to do. It’s a strange mixture of emotions, like grief, anxiety, and sadness all rolled into one. Sometimes this might make me seem like I’m not interested in your child’s achievements. Please remember I absolutely am – but that I’m also trying to process this strange mixture of emotions at the same time.’
15. Please don’t say our child is naughty
‘My son can be naughty like every other child – but because of the fact that he has autism and other special needs, he can get unsettled in certain situations and find it difficult to sit still. While we might like him to behave appropriately, the reality is, he can’t. We’re doing the best we can, and we’d love your support by not referring to him as ‘naughty’.’
Do you parent or care for a child with a health condition or special needs? What would you like your friends to know?
Friendili is a new friendship and health network for families. You can find friends like you, near you, sharing similar life and health journeys. You can find out more here.