Living without diagnosis: My bilateral hip dysplasia experience
The doctors instantly noticed that something was wrong when I was a baby. “It’s not bone cancer,” they told my mother. Instead, they diagnosed “inverted hips.”
I now know that I have congenital bilateral hip dysplasia. This is an abnormality of the hip socket that causes friction in the joint.
Hip dysplasia is the most common cause of arthritis among young adults. The pain occurs most often in the groin, lower back, and hip joints. It can impact the knee joints, too.
The abnormal hip socket can also affect the elasticity of ligaments and hamstrings. The result is a painful, inflexible lower body.
The condition requires therapeutic and medical pain management as well as invasive procedures such as hip replacements, as wear and tear damages the joints.
I’ve been blessed with friends who have their own experiences with chronic conditions. I’ve observed how they cope, take ownership, and vocalize their feelings, and I’m inspired by them.
I want to explore my pain more and understand why I’ve never been comfortable talking about it. I have no doubt that some of my discomfort is existential guilt. I know that other people experience worse pain than I do on a daily basis. We’re all aware of our joints jabbing and rubbing away at us.
My parents encouraged me to live as if the painful mobility was no barrier. They didn’t discuss it, so I didn’t. This pushed me to get on with life without complaining or seeking much help. The problem with this is that I never found the right moment to tell somebody about my condition. The moment passes, and that can be tough.
Dysplasia was not noted in my school record, nobody mentioned it to any club leader, and I haven’t even mentioned it to my manager. Most of the people I’m closest to don’t know, and I am O.K. with this. I don’t want to make a statement for special treatment. I also don’t want to feel inferior. I can do everything I want — even with the pain.
Most children have their literary heroes, such as Hermione Granger or Sherlock Holmes…but mine was the lame boy from The Pied Piper. Instead of a cautionary warning of honoring agreements, it became a dark morality tale — recounted as a bedtime story by my mother — of a wise boy using his lameness to his advantage.
He did not run with his friends to an idyll of caramel and rainbows but took his time to consider the bigger picture. Seeing the danger of the mountain cave where his peers would end up sealed and entombed, he lived to tell the tale.
My mother meant well; she wanted to give me someone I could relate to, and it worked. I’ve always looked to find the positives in my condition.
However, secrecy has left me isolated within my own body.
The awareness that I was forever conscious of my condition but understood so little of it was getting me down. The pain was growing ever worse, too.
I considered a walking stick, but did I need one, or would it just be an affectation to broadcast my condition, symbolic of a scream?
This question helped me commit to finding out more about my condition — for the first time as an adult.
By talking with friends and receiving messages of support on social media, I started to gain the confidence to make a doctor’s appointment.
I was nervous about seeing a doctor. Would they find anything, after all this time? Did inverted hips actually exist? Would they offer a means to get rid of the pain? This was a strangely frightening prospect for me. My relationship with my pain is masochistic. The pain, I’ve often thought, suits me.
I’ve gotten to know my particular pain. We are not friends, but the connection is not toxic either. It’s never guided my choices, but it understands what I am capable of. It tells me not to feel sorry for myself but reminds me that I am fragile and need to be careful with myself.
The pain has also been something to rally against — rage against, even. When I need it to, it makes me want to put one foot in front of the other again and to make me take one more howling step along. These are my legs. This is my pain. This is how I walk through life. Would I be the same person without it?
The doctor asked me, on a scale of 1–10, how bad the pain was. Ascribing pain on an arbitrary scale is an odd thing. It’s a mechanical numbness, a buzzing electric coil, hot custard over warm apple pie. It’s about a 6?
He sent me for X-rays. The nurse positioned me under the aperture apparatus with her cold hands on my hips.
I finally saw an X-ray of my pelvis and hips, and it was beautiful. I wanted to make it a stained-glass window. It was the first time I could look at what was troubling me. Instead of a curved ball and sockets, my hip joints fit into my pelvis like pins. I saw white mist around the joints: arthritis.
The results were returned. The doctor took the computer mouse to scroll through the notes on his monitor with all the body language of a sigh in his wrist.
“You have congenital bilateral hip dysplasia,” he said. “There’s wear and tear but nothing too much to worry about. Your extreme inflexibility around the area is causing you to pull on hamstrings and tendons, which are losing elasticity as you get older.”
“Take painkillers as you need them. Look into getting exercises from a physiotherapist to get those soft tissues stretched. That’s all I can say to help you.”
How my diagnosis changed my life
Seeing the X-ray images and having a diagnosis helped more than he realized. The answers were more than his brief prognosis. I now feel assertive with this condition. It is valid: it has a medical name, and I’ve found an institute.
Going to visit a doctor with a determination to learn more about my condition has been great. I am already increasingly comfortable living with my condition as a normal part of life, and I openly take pain medication and adjust any joint supports. And, if I’m asked about my condition, I’m happy to answer. I can point in the direction of an entire institute.
Today, I’m trying to follow the strength I see in my friends. I am positive in approaching my pain as part of a normal way of living, openly and without guilt, regarding my limitations or what I do to manage it.
I’m not seeking sympathy, but I don’t feel bad about voicing the times I do struggle. The pain is no longer negatively charged emotionally as a big secret.
I want to thank my friends — they know who they are — for letting me travel with them, now at our own pace, to the mountain’s open mouth.
All I need now is a pelvis bone tattoo on my forearm, and I’ll be booking an appointment soon.
Source: Read Full Article
