In depth: My experiences with a long term condition
"In A&E a doctor spoke to me and I told him all of my history. And this was not long after I had my kidney removed. And he went to speak to his senior, and this senior doctor turned around and said: 'You can't lose a kidney because of endometriosis.' So I requested that...read more
"We're not being believed in healthcare. Turning up at A&E and being told that your pain can't be that bad, that you're not that unwell, made to feel like you're going mad yourself. And especially when you've got a mental health condition, you do start to really check in with yourself...read more
"Dealing with a complex chronic health condition, without that support and understanding from both colleagues when I was working in the health service, but also from my clinicians when I was visiting them, is very difficult. I even had one consultant suggest that I had Munchausen syndrome, or fictitious illness...read more
"It's been 20 years going round in circles. You go to a doctor's and say, 'Oh, you know, this is happening to me.' [And they say] 'I'm going to increase the tablets.' And it's like: I'm already on ridiculous amounts of morphine. I don't want to go any further. "
"Every department should have access to your full medical history. And I feel like the partners should be able to discuss things with each other, like your mental health specialist should be able to discuss with your endo specialist. They should all be able to speak to each other and...read more
"It's such a rare condition. It's so misunderstood. There's not enough awareness, even amongst the medical profession that I genuinely... the only time I feel heard as a patient is when I go to London and I pay the doctor to listen."
"I think the unknowns cause a lot more anxiety and stress, which you really shouldn't be having with long conditions. Even if you're healthy, you shouldn't have stress or anxiety because it is bad for your health. So, in a way, not knowing makes everything else worse because you have that stress, you have anxiety and you have...read more
"I just pray that my GP doesn't ever retire... I don't know how anyone else will deal with me. And I'm scared that they'll take my medication away."
"Because you've been on tablets for the last nine years, nobody cares about you. You're just a number...I feel sometimes it's like no professional actually cares."
"Having that diagnosis, depression, in my notes, I think has coloured a lot of my health experiences since then. And I'm sure I've had other episodes of depression. But I think a lot of things that weren't depression have been labeled as depression. And I've been under the care of the mental health team,...read more
"I just feel there's a massive almost naivety or ignorance when it comes to understanding what someone's going through, if you're not going through it yourself. And in conditions where it's chronic, or long term or permanent, people tend to lose interest after a week or two."