A hidden condition
Hi, I’m in my mid-twenties and I live with Cerebral Palsy.
For many years from around the age of 14 years old, I have experienced increased levels of pain in my hips and back as well as other symptoms. This seemed to become worst during my periods. The pain increased very slowly over time and I just put it down to my Cerebral Palsy and changes in my daily routines. I didn’t think to go to the Doctors. Not for one moment did I ever consider that these symptoms were being caused because of a completely different condition.
However, I have learnt that this is exactly what it is. Following quite a rapid deterioration in my health and severe stomach pains, my Mum insisted I go to the Doctors and describe how I had been feeling. I did this reluctantly and following scans to rule out possible scenarios, I was referred to a specialist clinic. Here, following examination and further scans, I was given a diagnosis and told I would need an operation to firstly confirm diagnosis and the extent of it and secondly, put a treatment method in place. I was also told that it was a condition that I would have for the rest of my life and that was more complicated due to my Cerebral Palsy. To this day, I still don’t know how I felt as we left that appointment and still don’t know how I feel about the diagnosis. To me, it didn’t make sense, I had Cerebral Palsy and this was the cause of all of the pain, how an earth could this be something else. I understood all that I had been told and took it on board but I think there was still a part of me that believed or hoped that when I had the operation the diagnosis wouldn’t be confirmed and it was all a mistake.
The operation took place and I woke up in recovery still believing or hoping that I would be right and the diagnosis would be wrong. The surgeon came to see me and explained that during the operation they had found much evidence which led to the diagnosis being confirmed and explained the extent of the condition to me and what it would mean for me long term. I must say I am extremely grateful to my wonderful surgeon and their team for treating me and for looking after me so well, some people in our NHS truly are amazing. The surgeon also explained that it was highly likely that I have had the condition for a number of years but due to the similarities in some of the symptoms it was easy for the condition to go undetected and is not easily diagnosed in a person without CP.
I feel as though now is a good time to level with those of you who are reading this, knowing the impact that this condition will have on my future is something I am still coming to terms with, but at the same time it is about acknowledging what is right for me, my body and my quality of life. I am extremely fortunate and it is about remembering this. I want to be able to have a positive impact on the world and support people, perhaps talking about my experiences is one way of doing this, we shall see.
If I may, I would please like to share one experience with you, from when I was about 15 years old. I had been experiencing increased levels of pain in my hips but scans were not showing anything physical to explain this at this point, which was positive news. As a result of this I was referred to a rehabilitation clinic for pain management as they believed it was possibly related to something neurological. I had to see one of the Doctors who ran this clinic and it is probably one of the worst experiences I have ever had with a medical professional. Firstly, they asked me some questions. Then they carried out an examination. After they had done this, they sat down, looked at me and said “Sometimes we think we imagine pain for many different reasons including to gain attention and I think that is what you are doing”. I had literally just met this man and he was making judgements based on answers to a limited number of questions and what he had seen. I was so shocked because there is absolutely no-way I would do this; I know there are so many people out there who experience far worse than I do, both medically and in everyday life and I have always known this. This appointment led to me just feeling completely empty as I knew deep down there was something not right. It knocked my confidence, made me doubt myself, question what others thought of me and contributed to the already difficult battle I was having in learning to live with my CP. It also made me close up and made me very cautious about going to the Doctors.
Ten years on, knowing that I have a diagnosis that explains, not only why in recent months I have felt so unwell, but also some of the experiences in my teenage years, reflecting on this appointment, I have learnt that you have to trust yourself. I am a little sad as it impacted my teenage years and into my early adult life, however regret is not helpful and I believe my experience has helped me to grow into the person I am. For a number years, I have been living with a condition that no-body, including me, knew I had, if I can do this, I can do anything. During this time, I’ve done so much, often feeling very poorly but not often expressing it, and so now that I am being treated for this condition, the possibilities of what I can do are endless.
I would urge anyone, but particularly those living with CP, if you experience pain or discomfort that is out of your ordinary and it persists, go and get it checked or talk to your consultant if you have one. Living with CP is uncomfortable at times but you know your body and you know when something doesn’t feel right.
I have learnt many things from this including trusting yourself and how important it is to continue to seek medical support if you need it. I’m not ready to name the condition but in time I know I will be. I hope this is the first step on this journey.
Thank you for taking the time to read this.