Judgmental hospital and drs : Hi, I was told 8 yrs... - LUPUS UK

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Judgmental hospital and drs

Jammyonion13 profile image
9 Replies

Hi, I was told 8 yrs ago I had an autoimmune disease but we won’t give it a name ! Huh What?? I’d been feeling like I was crazy for 3 years actually being told it’s because I have bipolar Obviously I wanted to know what it was but just left the consultants room saying thank you and feeling really upset at myself for not saying that’s not good enough I want to know what it is, anyway the consultant who was really lovely apart from not telling me what was wrong retired I’d had a lot of bad experiences at the hospital I was at so decided to change hospitals within 3 months of being at my new hospital I was given a diagnosis of pbc a few months after that another diagnosis osteo then fibromyalgia and another of slow transit constipation I then saw a different consultant at my new hospital who said he wasn’t happy with my connective tissue disease diagnosis so wanted to do more tests to rule it out I got a letter saying my blood tests have came back and I have lupus I have been a proper mess for about a year now and in shock I was relieved to find out I wasn’t crazy (just crazy) when I had the pbc diagnosis but to have all these was too much I nearly ended up back in the mental hospital anyway the reason I’m writing this is because I was made to feel it was all in my head when clearly it was the hospital I was at who looked at me saw bipolar and decided that’s what’s wrong I’m still really down but trying my best to pick myself up I have an amazing gp and 3 great consultants who are so kind and put my mind at rest (most of the time) if anyone feels unhappy with the consultants or hospital you are at you can change them i know there are so so many people out there who are made to feel it’s in there heads but I’ve had bipolar since I was 19 I’m now 49 and know the difference between mental and physical illness thank you for reading 😊 Jane 😊💞

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9 Replies
whisperit profile image
whisperit

Thanks for your story, Jane, I think it will strike chords of recognition with lots of us here. Lots of confusing diagnostic labels, or none at all, clinicians suggesting it's all in our heads, contradictory interpretations of blood tests....all seem familiar! Glad to hear you have reached a better place. Hope you'll continue to post and share your experience and knowledge with others x

Jammyonion13 profile image
Jammyonion13 in reply to whisperit

Thank you for replying 😊😊

DJK99 profile image
DJK99

Hey Jane - goodness, what a tough ole time youve had for such a long long time. What a survivor you are. Well done... if thats OK for me to say. I can empathise. Sounds like you have a good network in place now eh? May everything get a little easier for you bit by bit Jane... and always reach out on here if you need to... such amazing people. Big hug D x

Jammyonion13 profile image
Jammyonion13 in reply to DJK99

Hi dj aww thank you that’s so lovely of you to say and yes I’m really lucky to have such a great team of drs 😊 and an amazing family big hugs back 😊x

Sorry that you have been through a medical gaslighting journey - same as so many here. I know Lupus, PBC and being bipolar must be a hellish combination but I am guessing you are coping better now you’re believed and under good, kind doctor’s at least. 😊

Jammyonion13 profile image
Jammyonion13 in reply to

Aww thank you so much it is hell sadly for all of us you have all been so kind I feel so crap tonight I am aching everywhere I feel sick weak drained my insides hurt my head is splitting everywhere stings from scratching I’m proper feeling sorry for myself my husband is an angel and so is my amazing beautiful 10 year old daughter I feel I’m a burden on them but I’m not they love me I’m so lucky to have them they help me fight my husband helps me with everything my daughter is so lovely she makes sure I’m ok she’s not meant to watch American dad and family guy but we laugh and joke together over them I love that sorry I’ve gone on 😞 thank you 😊💞😊💞xx

honeybug profile image
honeybug

Xxx

Lupiknits profile image
Lupiknits

Welcome Jammy. I have, after the number of physical struggles similar to others here, a full and definite bi polar diagnosis. That’s taken years. It’s a bummer, but well controlled, and I see a psychiatrist every six months at least and can ask for appointments if I need them. He’s the best of the many I’ve seen since a child.One advantage of this that if a medic so much as suggests anything is in my head or I may be depressed I can put them right and tell them to discuss it with my psych. Now all I need is them to get their medical heads together properly.

It is c**p to have gone through everything you have and I hope life becomes better x

Jammyonion13 profile image
Jammyonion13

Thank you 😊

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