i can see why you’d think this and forgive the thesis I’m about to write but hopefully it makes sense! It’s really close to my heart as it’s my experience so I’m not having a go I’m just really passionate about it and suggesting that normal tests = no illness is a common misconception (and I guess understandable) - if that’s true I’d better sell my wheelchair eh?
Many, many illnesses do not have reliable one size fits all diagnostic tests or treatment. My condition is a cluster of symptoms that over 250k people in the UK have - whilst everyone experiences this condition differently, there are main symptoms that everyone experiences that if they could be treated, would drastically improve my quality of life and allow me to work more. Would you tell someone with rheumatoid arthritis or M.S which are diagnosed by exclusion that they don’t have an illness because it isn’t showing up on tests? Long Covid/ME don’t have diagnostic tests either but shall we not set up any research into the treatment of that? mental health issues don’t show up on tests but are real. Should the healthcare system just assume that we know everything there is to know and not strive for more effective treatment and understanding of common but complex illnesses?
People deserve quality of life and research into little understood conditions - surely that’s the whole point of healthcare? Currently a lot of treatment IS inadequate and patients are just expected to live with pain. Tests coming back normal doesn’t just magically disappear your symptoms and make you all better although I wish it did
Research into treatment for these conditions is underfunded and slow and a lot of that is to do with people having really crap attitudes towards chronic/‘invisible’ illnesses. People only care when it happens to them. Is it that an individual member of the NHS’s fault? No. I don’t view the nhs negatively because they can’t treat me, I view them negatively when they deny me my basic dignity because of their own preconceived opinions and views on disability. Maybe I’ll never be cured, but tbh I’m fine with that, they’re not miracle workers and I don’t think healthcare will advance enough in my lifetime.
However that doesn’t mean I should be neglected and left to piss myself because I can’t walk but the nurses believed I just wasn’t trying hard enough. I’m talking about medical negligence which if you have a widely misunderstood chronic illness is sadly a really common occurrence. I have met some fantastic doctors who tried their absolute best for me but it doesn’t make the traumatic experiences any easier to deal with.