Patient Stories

An invisible disability

Hello this is Aabha. I have a congenital hip Dysplasia in my left leg. I am now 31 years old. I have been living with a painful and fatigued body since I have got senses of myself and my surroundings. Its been a roller coaster ride from visiting doctors to fighting with anxiety, gut issues and multiple depressions, self-doubts and concurring every episode. Since the age of 22 I started to look upon my condition and study through online sources, I even read research papers. Being a science student I was challenged by a person to discover the knowledge about my condition and to find a cure but without a warning sign that it can lead me in depression and anxiety to know of possible future of acquiring early arthritis etc. and knowing the fact that there is no cure except hip-replacement which in itself not recommended to an active adult in her twenties or thirties or even forties.

I happened to stumble upon the story of “Jenni” on this platform. Whose story is so similar to mine and it encouraged me to share through this platform. My parents also noticed my limp when I just started learning to walk. They took me to a child doctor (pediatrician) and he overlooked and sent them back home stating that children are playful, they do it. I was their first child (girl). I started complaining of pain after a whole day out in school and on playground when it was time to do homework (to sit down). From the age of 5-8, I was mostly ignored in the pretext of making excuses to not to do my homework. I had painkillers almost everyday at such a young age. Then my mother realized that something is wrong and she started to take me to several hospitals, where she learnt my condition. Of course it was too late to fix the femur head to the socket as the bones were matured. We chose a doctor near to our home (for easy commute) to do a surgery which included supporting the femur head in place (In my case, 100 % femur head was out of the left hip) knowing the fact that this will last up to 10 years (hardly). Many years after recovering, I picked up sports like table tennis, badminton, cycling, but my left leg became weaker and weaker however with bearable/manageable pain. I turned 18, I went far away from home to study in a residential university, my physical activities started to increase because my mind wanted to do so many things watching other girls doing that normally and to enjoy the freedom. I had to walk a lot. As a consequence, the excoriating pain re-appeared on daily basis that I twisted my left ankle on several occasions which made things worse. I was getting mentally exhausted because of constant pain. My friends used to give me massages to comfort me. I finished my engineering degree and then the marathons to doctors started once again and was told not to walk a lot, climb stairs, overall minimize the physical activities. Nothing worked out. I decided to take up yoga which healed my mental health and gave me confidence to keep my body flexible. I started to feel better despite of discomfort. I decided to join post-graduation as my dream was to become a bio-tech researcher and scientist. Things went well for two years as I kept on doing yoga and meditation. I also realized by that time that few things are not meant for me, and which are, I should be focusing on that to uplift my overall health. I am about to finish my Ph.D. now. Of course, it required me to stand for long time, walk distances, sometimes stairs. No day has gone without pain or discomfort. But I fought everyday. I have even developed stiffness in my right leg and hip due to constant pressure, lower back pain (which I never thought of having). I have developed a high tolerance to pain. I love hiking, but it comes with a price. I do not know what future holds for me. When I read Jenni’s story, I felt a set back for a while, I completely resonated with her when she mentioned about people’s judgment. I haven’t got a disability certificate yet. But everyone’s dysplasia is of different degree and nature. After several winnings over life, especially mental breakdowns, I am confident of the final victory.