Invisible Illness Awareness Week has rolled around yet again, and this time I decided to do something different. Inspired by the lovely Sophia, I thought I’d get my mummy involved and ask her a few questions about what it’s like to have a child with chronic illness.
I’m 27, and am unfortunately much more dependent on my parents than I really would like to be. It’s not the ideal situation for anyone, but it is what it is.
And I know that I’m very lucky to have a really amazing support network. That being said, having a chronic illness can often make us really selfish – we struggle so much that we often can’t see past our own suffering to see how our health impacts on those around us who love and support us the most. And I know that I’m definitely guilty of this.
So, it’s time for Mummy Lipman to come centre stage and answer the most important question: “do you feel guilty for passing on your shitty genetics to your darling daughter?”
This interview made me cry.
Hi Mummy! So, I didn’t get diagnosed with EDS until I was 21. We didn’t really think that anything was ‘wrong wrong’ with me, even though I was constantly in and out of the hospital and in pain. When did you first notice that there wasn’t something ‘quite right’ with me, and growing up how did you manage that?
When you were four years old you were sitting on my lap on the swing and I had my hand on your knee and all of a sudden it moved from one side to the other. That’s when everything started. You saw a consultant who said you had loose ligaments and needed to strengthen your legs – so we signed you up for ballet classes. You quit because you said it hurt, but at the time we just thought you were complaining because it was getting hard!
From about the age of 9 you seemed to have more and more problems with your knees. When you were 11 you had your first proper dislocation and had to miss about a month of school. From then on you seemed to be in a lot of pain and had further dislocations. Every time something happened we just dealt with it and had no idea that were was actually something potentially quite serious going on with your body. We just dealt with each acute problem and moved on until the next time!
When I was younger, you often stopped me from doing the things that I wanted to do (so mean), like going to Canada on the ski trip, going away or going ice-skating with my friends. How did you cope with that? Especially as I was quite young at the time?
It was actually really hard to deny you doing all the things that your friends were doing. I had to be really tough with you. As a parent your job is to do what’s best for your child, so I suppose I had to use my head rather than my heart. We have had many tears over the years, but on reflection I think I have always tried to do what is best for you and have tried to minimise your suffering.
I also had to cover up how I felt about watching you suffer. Showing too much sympathy (even though I felt an enormous amount) wouldn’t do you any favours, so I was more matter of fact and you just got on with it. I hope I have succeeded.
Natasha note: this is where the ‘we’re only allowed to wallow for 24 hours’ thing came from and it’s actually been incredibly helpful in my ‘just get on with it’ outlook on life. You’re the best, mum!
Did anything change for you when I finally got my first diagnosis?
Not really. Putting all your symptoms together (and things we didn’t even realise were symptoms!) started to make a lot more sense. But it didn’t really change anything because there wasn’t anything the doctors could do. We still just carried on doing what we were doing before and tried to cope as best as we could.
What has been the hardest thing for you to cope with over the years?
Watching you struggle to come to terms with the fact that you can’t do the things that you really want to do. As a parent all you want is for your children to be happy, and there was absolutely nothing I could do to ease the pain of you not being able to do those things, and the grief that you were feeling because of it.
The hardest thing in the world is to see your child hurting, but it wouldn’t benefit you to see how sad and hurt all of this made me. So I put on a brave face and we just got on with it. If there was something you wanted to do but couldn’t, we would try to come up with a sideways move that might help you achieve this.
How do you think my illness has affected our relationship?
I am so proud of you (Natasha edit: aww shucks) and I think because you have been more dependent on me than you would have wanted to be it has drawn us closer. There are times when you annoy me just as I do you, but I have bitten my tongue on many occasions and am glad that I have. Of course, we have had arguments over the years, and yes, we have been through the ‘I hate you, you’re the worst mother’ phase, but we have come out the other end and I’m glad to say that we’re close.
What tips would you give any parents who have children with chronic illnesses?
Just go with it. If you feel pity and sadness for your child, try not to show it. You have to portray a positive outlook, even if you don’t want to. The worst thing for them is to see how you feel because you want them to be able to carry on and cope as best they can and not to give in. Even though you may not be able to understand how they feel, you can be there for them, and sometimes that’s all you can do.
You can also check out my latest interview with the Health Bloggers Community. It’s a good’un!