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"My general experience is of seeing people locally, who tell me I can't possibly have the condition I think I've got. And then fighting over several years. Eventually getting to see a specialist, usually in London, [saying I've] got what I've known for years. But can you put it on...read more
"He said, 'It's you just tension headaches because you have a mental health condition.' And I thought, 'This is ridiculous.' [So] I suggested that I came off a new medication that he put me on because one of the side effects was migraines. And he said, 'Oh no, it doesn't work.You're...read more
"I'd like to see much more joined-up care for complex conditions, particularly people with multiple chronic conditions. Because my suspicion is I've only got one condition. And all the others are just symptoms of it."
"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."
"When you suffer with a rare condition, and a chronic condition, you do become an expert... there does seem to be a lack of wanting to accept that amongst the medical profession here in Wales."
"I had an MRI in August last year that found a cyst. I realised it's an obstruction and that there will be a major issue. So I was placed as a priority at that time. When they officially told me in October, it took them from August to October to tell me...read more
"I knew when I ovulated because it felt like my actual stomach had exploded. But they still made out that it was all in my head. After a year of doing this, they got me onto antidepressants. They convinced me that I was depressed when actually I was in chronic pain and trying to...read more
"It's miscommunication. I could paper my house with hospital letters that say utter jibberish. And when I see letters that have been sent to my GP about things I'm supposed to have said or been diagnosed with, or conversations that we had. Honestly, it's quite scary because then the next time you go to see anybody, they're...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
"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. "
"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
"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