"No one ever believed me."

My mum had this condition called Elhers Danlos Syndrome (EDS) it's a very rare condition that comes in many forms but , can shorten someone's life expectancy significantly. It causes alot of pain in the joints and makes it very hard to have mobility without severe pain. However alot of the time people with EDS look like normal people. 

When I was 17 I was admitted to hospital because I could not feel my legs or walk. I was in hospital for a week and half of the tests they were meant to do they never did. I had a professional nurse come to see me who told me " You don't look like you had EDS" and then discharged me. 

I have been re-referring myself for EDS for years since and all my referrals are either never made to begin with or lost. I have spent so long chasing it up and as it can be passed on genetically I should be taken seriously but I never am. Now I am alot less mobile then I use to be and in far more pain but I am still called a liar by doctors and nurses. 

I even tried to apply for pip due to this and they called me a liar. When I appealed they sent me the exact same letter I was sent the first time. I shredded all of them because of the bad memories and since then I have become more and more depressed to the point of feeling suicidal just because of the fact , that every time I go to the doctors they try and tell me how I am feeling and call me a liar, or they tell me it's too rare to diagnose and I can't possibly have EDS because I am too young. I am 20 years old and have heard that so many times it doesnt shock me that some people my age have a month to live because doctors didn't believe they would have cancer or a problem due to being too young.

Even in the mental health field I have been left alone. I have severe depression , anxiety and schizophrenia,  but I am still not taken care off properly. When I went to the Early Intervention Service (EIS) I got told I probably have drug induced psychosis but I have never taken any drugs in my life. I also got diagnosed with Emotional Identity Disorder (EID) anorexia and bulimia at the same time by they failed to tell me this and I only got told recently which is really dangerous. Even now I am struggling with suicidal thoughts but rather than being kept an eye on I have been reffered somewhere and dropped yet again. 

I feel like the health care system in the UK needs to change because of the fact that doctors and nurses should not judge you and tell you what you have. They should listen to everything you tell them first and then make a decision because every time I've gone to a nurse or doctor they have spoken over me , twisted my words and made it seem like I was making it up. I was even called a hypochondriac by a nurse and doctor even though they didn't bother looking up anything or even listen to what I had to talk about. 

I feel like appointments are rushed and disabled people are discriminated against. How is it okay for a professional nurse or doctor to tell someone they are too young to have a problem or that they are a liar. Why is it okay for doctors and nurses to twist patients words.

They should also have better facilities for deaf people because I have hearing loss and I can't hear people on the phone very well at all so, why are all the appointments made over the phone without the option of emailing someone or texting them. I have even been refused a face to face appointment at my doctor even though I told them appointments over the phone are difficult because I can't hear them properly.

I don't know who to go to or what to do because I am starting to give up on sorting my health out because no one ever takes me seriously at all. I have probably ended up harming myself more due to failures of care and now I could be done for fraud due to people not believing me when I tell them about my problems. 

If anyone has advice on how to get taken seriously by health care professionals in London please let me know because I am giving up on myself and am very suicidal due to the accusations I have had from professionals. I'm scared to go to the doctors or hospital due to them putting me down and not taking me seriously but also because of the fact that everytime I go to a hospital they mess something up and make me feel like it's my fault. 

I just wish people with EDS and other hidden illnesses were taken seriously because by the time my mum got diagnosed it was too late, she was experiencing the same discrimination I experience now but nothing has changed at all.