Thursday, 4 July 2013

The Perseverance Of Getting A Diagnosis


It is something that we have all been through and possibly some of us are still going through. The waiting game of different hospital appointments to attend, being transferred from doctor to doctor, hospital to hospital with a few incorrect diagnosis along the way. It's enough to make anybody want to give up, I know I felt that way for many years. It took me from 2003 to 2010 and until I was 16 years old to get a diagnosis. To me that felt like a lifetime, but I now know from reading through forums and websites since that I was very lucky in that I got diagnosed at a young(ish) age. That doesn't mean it was easy. It was both physically and mentally difficult each and every step of the way for both myself and my family. Many people mention how that here in the U.K, there is a huge lack of understanding of Ehlers Danlos Syndrome which makes it all the more reason to raise awareness.

I had always suffered from stomach and joint pain from a baby. I was a late walker and bum shuffler as everyone says, probably seen as a lazy baby to everyone around me. Growing up I was always having tummy problems and was a regular at the doctors. I missed a hell of a lot of school from nursery until I left and was off every 3 weeks for weeks at a time with sickness, pains and sprains. I was also unable to do simple active things with my brother and cousins like running, sports, bike riding, climbing trees and even skipping. I was just always too weak, sleepy and in terrible pain for what seemed like no reason. It wasn't until I was 9 and when could properly explain to my family the exact pains (and their locations) that I was experiencing that we decided to go to a hospital consultant to get a proper diagnosis for all of my health problems.

The women of my family (my mum, nan, great nan, great great nan) have all had stomach ulcers and my mum was just certain when I was telling her of my severe stomach pains that I had one too at the mere age of 9. The doctors said this was extremely rare and pushed it aside and put it down to all sorts of silly things like, a stomach bug, migraine of the tummy or problems with my bowel. I went through all sorts of early stage tests at a local hospital and didn't seem to be getting anywhere. I can remember being huddled on the floor in the bathroom screaming in pain and my Mum taking me to the doctor insisting I see someone at a different hospital. I had drastically lost 2 stone in weight and couldn't eat or digest food and something just didn't seem right. We finally pushed for an endoscopy at a well known hospital when I was 13, and low and behold they found three bleeding stomach ulcers. I was tested and given medication for the H Pylori bug and that came back as normal (common for someone with my stomach problems), yet I was still experiencing severe pain. All through this period, my body was hurting me so much but because I was so focused on being under a hospital for specifically stomach problems, the doctors always forgot about the joint side of it and blamed it on growing pains. Who was I to correct the doctor, I just trusted what he was saying was right, especially when a doctor thinks that the medication you are on (for what they presume you have, which is in fact totally wrong) should be working.

Because I was still in pain and the medication they had given me hadn't helped me at all, instead of them trying to help me further the doctor turned round and assumed he thought I had an issue with going to school. Aswell as this, also an eating disorder, so he discharged me to see a psychologist, something I was really unhappy about because he had dismissed my problems and made me look like I was a liar. I can remember being 14 years old and getting this over whelming feeling that I needed to stand up for myself. I said to the psychologist (who was extremely lovely and understanding) that I didn't need help with my mind, I needed somebody to actually listen to me and help me with the unbearable pain I was having to go through. She in fact got quite annoyed at why I had even been referred in the first place and agreed with me. I could tell my mum and dad were proud of how I handled that situation. This was a good few years into finding out what was wrong with me, I still hadn't a clue what was wrong and it honestly does drain you. Not only is it stressful, you feel sad, misunderstood, frustrated and a bit mental at times. My secondary school was also getting annoyed at how much time I was having off.

This is when after a bit of persuading I got referred to The Royal London Hospital. Again I went through having many tests here, changing from doctor to doctor, being misdiagnosed yet again. I was telling one doctor about how much body pain I was experiencing and she was incredibly rude. She was over the appointment from the moment we walked in the door and we were only in there for 5 minutes. After us travelling 2 hours to the hospital every few weeks, one day I was so fed up that I had literally given up hope and was extremely distressed. I felt like nobody was listening to me and all these feelings of people doubting me crossed my mind. My mum asked at the reception if there was another doctor we could see there that day but they said if we wanted to see him we would have to come back a week later. This is when I met the angel of a pediatric doctor who finally listened and diagnosed me with the correct diagnosis. Within 40 minutes of meeting with him and going through my whole history and pain experiences he had diagnosed me with Ehlers Danlos Syndrome, referring me to UCL hospital to meet with Prof Grahame (The top specialist) for a confirmation and to also permanently stay under his care with input from another Professor who was infact, one of the only specialists at the time in the country. The relief we felt as a family that day was as if all of our prayers had been answered. What was also so strange about this day was that my nan had spoken to a distant relative who mentioned his daughter hadn't been very well and infact had EDS. Nan noted it down to tell mum about it later that day and when we got home and saw that I had just been diagnosed with the same thing it was very surreal.

The years of being undiagnosed is a scary process. I still get scared going to my monthly hospital check ups because I'm learning from this illness everyday. Having to be in hospital and have many tests to try to eliminate and determine what is wrong with you is a daunting prospect, for not only the person going through it but  parents too. Being hospitalized has always been one of my biggest obstacles. An illness can change a whole family, especially when its very complex. I would say in theory I struggle more with my illness now than I did back then but that is simply because it is incurable and at this point controls my life.

All I can say is, for anyone that still has a question mark hanging over their heads, you know your pain and body. You must keep on and on to get to the bottom of it. Even if the way you are describing your pain to someone sounds weird to say out loud and you feel like a fool and embarrassed, just say it! Even the slightest thing like a description of tingling/crawling skin and burning red skin could help piece your puzzle together. Fight your way through the hardest times to see specialists. Don't doubt yourself and don't give up. Even though your illness may be incurable it is such a relief  knowing that you have a name for all of this pain and sensations you are going through and have felt for so long.

I hope whether you have been through a long diagnosis or are going through one right now you realise how strong you are and to never give up hope. It may take months, it may take years but there will eventually be one doctor who will do their upmost to help you.


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