Here it is, my third interview. Jessica's story is different to my previous ones because she was born with Hip Dysplasia rather than developing it later in life. I think that many families may relate to this story and I believe that her message is important to share!
When were you diagnosed?
I was diagnosed when I was around one year old, my mother was the first and only one to notice it as I started to learn how to walk.
What were the symptoms and events that made you go to the doctors/ hospital?
When I was born I was breech but the doctors had to turn me which some people say can lead to Hip Dysplasia. As I started to walk my mother realised that I was limping. She noticed that when I’d sit with my legs up, my legs went in two different directions. My right leg sitting normally and my foot straight up. My left leg was resting unusually to the left and my foot was pointed to the left instead of straight up. However because I was walking regardless and didn’t seem to be in pain, no one believed my mother.
What did the doctor do to diagnose you?
My doctor decided to do x-rays of my hip and also general examinations. He would have me lie down and he’d bend my leg up, and sideways testing the joints. I would scream in pain when he moved it side to side and of course he knew along with the results of my x-rays.
What did the doctor recommend?
He did an Osteotomy and put my hip back into place. Afterwards I was put in a body cast for about 3 months, then I was put into leg braces until I was 4 years old. I had to have a check up in his office annually to do general exams where he’d check the flexibility of my legs and see if I had pain left. Every year I’d go back for arthrograms, they’d use anaesthesia to make me sleep during the x-rays, but that was only when I was younger. During my preteen years it got harder because they no longer did arthrograms they did MRI’s. Getting the iodine injections for those were extremely uncomfortable for me. When I was younger my doctor told me that once I turned 16 he said I wouldn’t need any more check ups annually or MRI’S. I still go occasionally but not annually like I used to.
What has been the biggest struggle?
It has definitely been trying to make myself as comfortable as possible and trying to speak up when I need accommodations. I don’t like people knowing I’m young and disabled so whenever I do need something I rarely speak up about it. I feel ashamed if I do.
What has been the best thing?
The best part about having DHD is knowing how to take care of myself and knowing something about myself that not many people around me have.
If you could change one thing about your whole experience, what would it be?
I would definitely change how my mother reacted to it. I was always afraid to tell her because she’d freak out and become upset, which led to me growing up used to my own pain and never telling anyone. As a child it was very difficult not to tell my own mother the pain I was in because all I wanted was help. Now, however I don’t have this problem. I freely tell my mother about how I feel which I think is because I’m older now and take care of myself for the most part and visit my doctor by myself.
How did people react?
At first, no one believed it was true. Then after surgery my mother was the only one who was around me and paid close attention to me. My father and my older sister always did things without me while my mum would do things to keep me entertained at the house. Because I felt like too much of a burden, it was very lonely growing up in those stages of my life.
Trying to monitor myself as a young child. If I were on the playground at school and fell I would be extremely paranoid and worried that something might’ve happened to my hip again and I’d start crying asking the nurse to call my mum.
Do you use an aid?
I don’t use an aid all the time but I keep a cane in my car for times when I’m in a great deal of pain.
What are your goals?
I just want my hip to feel good when I go into my career and to know it won’t be holding me back. However I can do that, whether it would be medication or surgery or weight loss, thats all I want, is to never let it get in my way like it is now. Aside from the disability I want to finish college and become a radiologist (irony) and be overall happier with the cards I’ve been dealt in life.
Has having DHD changed your outlook on the world?
I’ve never thought about this until now but yes it has. It’s made me way more aware about people with disabilities and made me realise all the ableist things I had to unlearn that I was taught at a young age. I used to judge when I’d see a young person coming out of a car in a handicapped spot, but now I am that person as well. It’s defiantly taught me to be compassionate and caring, just by seeing my mother take care of me my whole life. I look at things in an optimistic attitude now because if I can manage my pain and have been through all that I did, my other problems seem minuscule in comparison.
What's one thing in the healthcare system that is a problem you would like to change?
It’s a problem to me that my doctor refused to prescribe me high pain medication because of my age, when really I’d only need them when my pain is too much for my regular medication. It’s like, what am I supposed to do? Waste my regular medication and be bed- ridden all day? Also the fact that they wouldn’t give me a permanent disability placard for my car. I’m not temporarily disabled so I don’t understand why my physician would only write me a temporary placard. The healthcare system seems to only cater to older patients with common diseases. The second that you’re young with disability you don’t get taken seriously.
What's one thing you would tell someone who has just found out they have DHD?
I would tell them to NOT BE AFRAID TO SPEAK UP and not be afraid for people to accommodate you. In the long run, you’re going to have to deal with this for the rest of your life, so it’s best to not hold back when you need something. Also, be patient with your body. For many years I hated my boy for putting me through so much pain and heartache but I am better for it, and your body should be taken care of and appreciated no matter how much you think it mistreats you. Trust me, it will be hard for many years and just when you feel like giving up, please remember that there are in fact other people like you, even though it doesn’t seem like it. The online community is such a great thing!! Look into it and make yourself know and reach out to other people who have Hip Dysplasia. But most of all, good luck and take care of yourself in any means necessary.
Whats one thing you would tell an able-bodied person?
I always want to tell able-bodied people that they take their healthy bodies for granted. So please, take care of yourself and appreciate what you have been given. Not everyone, no matter what age, was dealt a healthy body. Be aware of us and our needs and be aware that there is a huge flaw in society about how we view disability. Educate yourself and hopefully through that you will be a little more compassionate to people with disabilities and learn to appreciate your body more.