Posts
"If you can't advocate for yourself, you don't get adequate health care. And that's as brief as I can put it."
"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
"The doctors and the “experts”, you know, you go into a doctor's surgery and you say 'I need help with something' and they just kind of shove you off in a completely different direction. I've spent years and years and years trying to get diagnosed with this disease. And it took...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. "
"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."
"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
"He said to me, 'We will have you out of theatre with a patient controlled analgesia, because we don't think that, in no uncertain terms, will we be able to manage your pain. You need to have control of your post op pain.' And I could have hooked, kissed and held on for so long...read more
"The consultant who said to me, 'I don't know', I actually thanked him for that. I think we need to empower consultants… [to feel] it's okay not to know.They'd get a lot more respect and much better co-operation with patients. "
"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