[Text on screen reads 'Hannah's story']

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Hi, I’m Hannah.

I’m 31, born and raised and living in Canberra. I’m a single mum and I have an autoimmune disease called lupus which I’ve been living with now since 2011, so for 8 years. My son is 11 years old now and I’ve been a single mum since he was 6 months old. When my son was 6 months old his father moved on and I’ve been doing it by myself since.

I wasn’t sick when he was a baby. Well, sick per se, I probably did have lupus then but I didn’t know and I thought that I was just feeling so unwell because I was so busy. You know, I was a single mum, juggling a million things at once. When my son was 3 years old the joint pain started to become more noticeable and things like my mouth was full of sores. So I went to my doctor and did some tests and, yeah, discovered that I had an autoimmune disease, lupus, which essentially is a disease that attacks every part of your body. Your immune system, instead of just attacking the bad parts is attacking all of the good cells as well. It doesn’t discriminate which cell it’s going to attack and you kind of never know what is going to hit you next.

Obviously trying to juggle being a mum and all these other things started to become extremely difficult. I had to rely a lot on my family and the people around me as I was really sick, losing a lot of weight. I ended up losing 45kg in well under a year and was hospitalised quite a bit and this was… really took a toll on me being a mum to my son. Y’know he spent a lot of time with other people and my parents and things but all he wanted to do was beat home with me and all I want to do is be at home with him.

I mean, being a single mum is hard at the best of times but when you throw in illness, disability, it feels often like it’s a million times harder. You feel so guilty as a mother, y’know, not being able to do all these things with your child. Like, I want to do everything for him and I want to be the one to feed him, clothe him, care for him, play with him, take him places. It’s not like that, you know and I have had to find other ways to do those things for him and with him, but with help.

My son is a young carer, really. The last six years he’s had to do so much around the house. He’s kind of had to take on this young carer role. That is sometimes hard to accept because you want your child to be a child. And most single mums, that I’ve met anyway, really do want to be the one that’s doing everything and, you know, is the carer and everything.

So, as a single mum with a disability, it’s different, because you have to let go of some of those roles and accept that that’s okay. It’s okay for your family to step in when you need them to step in. I know for instance with me, my dad really kind of took on the playful role. So he does the activities and physical things with my son that I obviously can’t do. And that is hard because over the years my son often would say, “Mum, I want to play soccer with you”, “Mum, I want to do this with you” or “I wanna go out and kick a footy, I want to run with you.” You know, like all the time, all the time. That’s hard, but the way that I approach it is – well, you know, I know that you want to do those things with me, but you can still do them, just with someone else and like, and like, and try and include me. So then I’ll be there, I might not be doing the thing but I’ll be sitting there, on the sidelines, you know, barracking for him and things like that. You just have to find the ways of still enjoying your time with them and still being involved, you know, just maybe not actually doing the thing that you want to do with them exactly. But, you’re still involved, you’re still there, they still know that you care and that you love them and you wish that you could do these things.

If I hadn’t of got my disability and my disease I would have had to work, you know, two jobs and... you know... if I didn’t have the pension that I’m on, I’d have to work jobs and I wouldn’t see my son as much. So I do try to remind my son sometimes that, I know it’s hard sometimes with my disability but at the same time we would not have spent anywhere near the time together that we did and we have over the years if I hadn’t of been sick.

I’m home when he gets home from school. I’m there in the mornings, you know. So, there are positives, you have to try and look at the positives of having a disability, having an illness. It’s made me a better person.

You’d be surprised how many people are willing to help out and support you. But you’ve got to ask. Don’t be afraid to... I know how hard it can be, you know, because you want to be independent and you don’t want to have to reach out all the time to other people, but it makes such a difference because it means your child won’t miss out.  

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