I thought that this opinion piece/letters in the Guardian today would make interesting, although not exactly comforting reading for all of us who have encountered false labelling, particularly in terms of being given a mental health/stress diagnosis by doctors too lazy or incapable to listen properly and join up the dots.
theguardian.com/society/202...
I hope the link works.🤞 Wishing you all the best health and the best doctors possible 🍀
Hoofprints thx for the article. The author/lupus patient/psychologist/woman integrated a whirl of disconnected issues I thought. So, I’m only going to address the one most important issue from which she strayed: women are too frequently accused (yep!) of a mental illness instead of exploring all profiles: blood, clinical symptoms, family gene pool etc. This diagnosis of mental illness in women is unfortunately historical throughout the world. It was given to me as well as I went on to acquire several AI diseases and finally lupus in 2016. I’m 65. And I’m in the US. And I had access to great healthcare. Women patients who are chronically ill almost need a lawyer to sit in with them at every clinic appointment. This won’t happen but I have learned to have a family member or friend be witness and take good notes.
That being said, lupus and depression are inseparable until treated correctly. This is biology; factual. When the diagnosis is correct and the medications are correct the patient, feeling better, is now responsible for guiding her mental health issues which certainly tag along with chronic illness. The author lost her way. How do lupus patients carry on and live their best life? How do they respond to people/family who regard their life chronically ill with disrespect? No one wants to be told that they have mental health problems. And it’s true women are victims of this diagnosis. But it’s also true that Lupus and chronic illnesses, misunderstood by most people, unfortunately depress body and soul.
You are so right that these chronic conditions can and often do lead to depression, and depression in itself merits the correct treatment too. I do believe that there's another type of depression that can be experienced as a direct result of the body undergoing any prolonged inflammatory process, after all the brain is part of the body and is influenced by hormonal and biochemical change. This is where I believe treating the underlying inflammation can directly improve the mood too.
I am so sorry you had a tough time getting diagnosed too. I now have further autoimmune conditions emerging and despite my vasculitis being clearly diagnosed, I'm struggling to get effective treatment, despite always having my partner with me for support.
I wish you the best of support and health going forward 🍀🤞
I had seen the article, which is excellent, and I was not surprised by the findings. I've also seen Mrs Marigold's reply. She is right in saying that a physical illness can trigger a mental condition. However, crucially, if doctors stop at the mental illness symptoms, there is a real risk of wrong treatment. Unless the underlying condition is diagnosed, and addressed, the associated mental one cannot be treated correctly, with the real danger of making things worse.
Yes I agree. And what I find particularly concerning is how the very best of doctors can be the ones who miss the diagnosis because of this bias.
And I'm not for one minute suggesting it's only male doctors who do this - I have been horribly misjudged and misdiagnosed by the so-called best of female doctors too.
Thanks for the link to this very interesting article. Not surprising though, sadly. I wasn’t so much diagnosed with mental illness during the years while my vasculitis gradually worsened, but fobbed off with statements like try not to worry, or being anxious about it won’t help your breathing….. And in the acute phase when I was in extreme pain, covered in rashes and ulcers I was told not to overreact, it’s just chicken pox. These suggestions that my mental approach was to blame for my symptoms paralysed me, I didn’t have the ability to challenge them. I wish I had been able to, and remind myself that on top of all that I was so ill, I had very little energy or capacity to fight back against what were casual assumptions made to get rid of me quickly. The psychological trauma was worse than the illness itself, and severely damaged my trust in the medical profession.
I can totally identify with what you describe - I had the same treatment, being told not to worry even though I could hardly function or walk and was forever catching infections. I was even told it was my fibromyalgia worsening as I became increasingly covered with rashes and suffering severe headaches like those I experienced with meningitis. These aren't symptoms of fibromyalgia!
I am still getting elements of this attitude now because my limited treatment hasn't managed to hold back new symptoms and I'm being denied any escalation of drug therapy on the basis that my blood tests have become normal since treatment with hydroxychloroquine. The deterioration is being treated as me getting depressed and not coping, rather than the clinical symptoms themselves worsening, and limiting me more and causing me to feel hopeless.
You are right that it is being treated this way on top of the illness which is as bad or worse than the illness itself. The most difficult thing to accept is that the way we are regarded is the one bit of our suffering that can be avoided, for which those treating us are wholly responsible. I wish I had a magic wand.....
While it is clear that this is a difficult subject, I think it is important that it is exposed to discussion and scrutiny. The more people - including health professionals - are aware of the complexities, the better the chances of a proper diagnosis, and so avoiding unnecessary pain and trauma for already vulnerable patients.
I agree 👍
Sadly, this is all to common and is something I also experienced before being diagnosed with GPA in 2016, after 18 months of repeated visits to GP’s and ENT consultants for increasing worsening sinus infections, hearing loss etc,. The trouble with this dismissal is that you also start to dismiss how you feel, thinking you are imagining things, which in my case nearly lead to my death. Currently, I think I am having a slight flare, having symptoms since the beginning of the year and again I feel worried I am imagining how I’m feeling so have delayed seeing doctors. When you have an autoimmune condition it is very hard not to have extra worry, especially with Covid and the implications it has to people in these communities. Also because what is happening to your body is not overtly evident on the outside, friends and family tend say how well you look, which also compounds this view that everything is in your head. It is easy to say that you should demand more, but when you are constantly dismissed by the ‘experts’ you tend to believe them, often because you feel too exhausted from the actual living with a chronic condition. I think it is actually the medical profession who should do better and organisations such as these which need to hold them account, because as an individual it is often a lonely battle.
I feel for you, tbrz. Let’s hope that this discussion, on this platform, is a small contribution to highlighting all these issues. Bon courage
I agree with you. It's very hard to keep demanding better help. I feel utterly worn down with trying to help myself at the moment and like you, am told I look well for someone who describes themselves as being so sick. It's soul destroying.
Also agree that the doctors need to do much better at diagnosing autoimmune conditions, particularly the sero- negative presentations, before the illnesses get out of hand.
I'm sorry to hear you were allowed to get so sick to the point of nearly dying.
I'm trying to psych myself up for another rheumatology appointment next week and must give myself a talking to!
Like you, I'm not doing so well, have had the results of an MRI of my leg undermined,as insignificant although I have swelling, oedema and think I have advancing lipodema now but no formal diagnosis of such from rheumatology. And when I complained about what was happening to my knee and feet joints at the last appointment, the rheumatologist said that she wished she could bring one of her patients with 'real problems with their joints' in to show me,!!!
I don't know where to go but know I must keep trying and am so grateful for the support on this forum.
So sorry to hear you’ve been treated like that! Lots of good luck with your appointment! I have recently started taking a friend with me, and the attitude does improve. Also I tell myself that I am entitled to the doctor’s time, as much as I need, I used to sometimes leave without asking my questions and was aware of the waiting room full of patients……but now I try to focus on my needs. I’ve also changed consultants over the years away from the dreadful ones, and now have a tolerable mix.
You absolutely deserve that time with the doctor. We all do. Let's hope our NHS gets the help it needs to get back on its feet and improve our care.🤞
OMG that is a disgusting response, sadly this is not uncommon. As Chipper03 said if you can take someone in with you, then you should, I’ve learnt and my husband comes with me mostly now after ENT consultants constant disregard of me. The trouble is you don’t always present with typical tick box results. For instance I was constantly going back to the GP as I was constantly coughing and breathlessness ,she listened to my chest etc and said there was nothing to hear, a few months later I was coughing up blood and with the current state of the NHS things are going to be even worse.
Good luck with you appointment 😊.
Good luck going forward to you too. Lots of us with vasculitis seem to have ENT problems that get dismissed for not ticking the right box.
Thanks, hoofprints!
We're changing our clocks (spring forward one hour) here in the States and looking forward to warmer weather. Though, as is typical near Chicago, it snowed last night.
Happy spring !🌼🌱
Happy Spring 🌱 I hope it's a wonderful one for you
Hoofprints you started a great thread even though outcomes of many on here are riddled with the guilt, shame, soul robbing words from medical personnel. I had a female thyroid Dr here in States who was said to be top in the area. Saw her for almost 10 years 2 times a year for check as I have Hashimotos. My thyroid became painful on the left side so I made an appointment. TBH, the pain was so bad it was an effort to talk. I was touching the painful spot when she walked in the door. She meanly yelled at me “So that’s what you are doing! Pressing on it to make it hurt!”
Without even thinking I said I’d like my file. You are fired.
It gave me no satisfaction. That story has more moving parts. But I will end this with : plz try to have someone come with you to advocate. I have also turned the recorder on my phone in my pocket. It helps me to review what was said and keeps my mind at ease to know I’m not crazy🤣🫣🙄😬 It is demeaning to be “made powerless.” I pray your next appointment you can take back your power of a real chronically I’ll person. Lol. We all deserve respect. MrsMarigold
Thanks so much for your supportive words Mrs marigold.I am so sorry you got such an inappropriate and chilling response from your otherwise trusted thyroid doctor. It's shocking, although sadly no longer surprising to me. I truly hope that you have found a trusted person to replace her by now.
We absolutely all deserve respect. I feel like reminding them that without us sick patients, they'd be out if a job!! So who is doing whom a favour exactly!! I don't get paid for trying to make myself better, but they do.
Respect has to be a two way process. At least they have had a choice in deciding to become a medical professional and sit there in front of me, but I've had no choice in becoming a sick person and sitting in front of them. I've taken great care of my health over the years and to no avail. I wish we could swap positions for a while!
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