Hi sorry needed to vent somewhere and some advice on how to deal with this. So I have written to my rheumatology Dr via email regarding random bruising on my thighs and pitting on my legs. Was told the I would receive a call from a nurse to advise me how to manage this. I received a call to then be told on the call a letter from rheuma Dr has been sent out to me and she doesn’t know how to advise me. She also ask if I would like an email copy which I agreed to. I open this email to see my rheuma Dr has said she has seen evidence of self harm on my arms. I have never self-harmed in my life! The scars she is referring to are burn marks which I got whilst cooking from a while a go. I am a darker skinned person POC that scars easily I still have multiple scars from when I was child, unfortunately I have scar prone skin. I think it’s absolutely disgusting that a dr would put this in a letter without clarifying. At my last appointment there was no indication that this was a concern. Not only that I have had a close relative and close friend self harm and always advocated for them to speak up about it. I find this very triggering and I feel gaslighted too.
I went to my dr for support and advice about a bruising a pitting issue ON MY LEGS and being told I self harm. Not only that I am a mother this could be really damaging to my home life. I no longer have faith in my dr as she has shown she isn’t listening to me and my issues feel minimised/deflected to something else. I haven’t been insecure about my burns until now. I have only looked at them as me being clumsy and having a scar from it, now I’m questioning if ours people thought they are self harm scars when they aren’t.
How should I go about this as I would like to escalate this? I also don’t want to have the same doctor.
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Severancered9
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This is awful on every level. How dare they put this put on paper, record it on your records without talking to you 1st. I'm so angry for you.I've always bruised very easily. After a friend pointed me to this direction, I now believe I have lipedema (along with everything else). It might be worth looking it up. Women with lipedema bruise and scar very easily.
thanks for the reply. I was just reading up on lipedema and also thought this could be the issue and glad you have mentioned it. Do you know which department lipedema is under?
Dreadful experience. There is a process for getting your record changed or amended. If you are talking about your hospital doctor then there will be information on their website about. Perhaps contact PALS to help you do this. Best of luck and don't leave this untruth unchallenged.
I would write back to the doctor telling them how outrageous and untrue their letter is and that it should be retracted and.advise them you are taking this to a higher level. Then copy them in to the complaint letter you send to management.
I have send my complaint and my doctor has replied with an apology but I have to say it was quite condescending and doesn’t really explain why I was given a letter about self harm vs the help I was seeking about bruising and pitting on my leg. The complaint team have asked if I’m happy with this and I have told them I not satisfied with this outcome and waiting on their response.
How disgusting—and without discussing it with you first! You are definitely within your rights to complain about it, and to request your records be corrected. If the doc won’t do it, speak to the office/admin staff. Illness is rotten enough to deal with; you don’t need false information and self-harm stigma on top of it all!
If I have correctly understood, you are talking only about your rheumatologist here. If so, what's your relationship with your GP like? Would they back you up/be a source of advice here here? PALS has been mentioned and I am also wondering if there is a relevant charity which might advise you here. Others on this forum might have ideas re the latter.I'm so sorry this has happened to you and I hope you will take heart from knowing people here are on your side.
I have reached out to PALS and they have sent it over to the complaints team. My GP may not be helpful as I have not seen him in years as it’s hard to get an appointment with him directly. I have cc’d my doctors surgery, dermatology and rheumatology in the email to the email to PALS.
It sounds like you have been pretty thorough and I guess you now have to wait. Please do let us know on the forum how this goes.Meantime, I send you good wishes.
No plan, just said she didn't know what to advise and that if I had something she could help with to call the nurse helpline. Which was quite irritating as I thought the bruising and pitting was something I could a least get advice on how to manage.
As someone has replied below, you must get in touch with PALS at the hospital where your rheumatology department is. Just call the switchboard and ask to be put through or ge the number form the hospital website. Be assertive! Good luck with it and let us know how you get on.
I also bruise very easily and over the years have had cuts or wounds that take a long time to heal and usually scar. I have SLE and several of the associated disorders. I know that bruising is a side effect of some of the Lupus medications.
However, I have also recently found out that I may have hypermobility (hEDS) as my daughter has been diagnosed with it. It's mostly hereditary and symptoms include bruising and what I'd call 'unusual' skin.
Just a thought that it may explain your skin symptoms. I'm really surprised that none of the medical professionals has suggested further investigation!
Good luck, I hope your situation improves and is sorted to your satisfaction soon. x
i have had a Dr mention this to me before but I don't think I was diagnosed with this. But it may be worth mentioning it again. My Nhs is rubbish tbh and this isn't even the first time I should have made a formal complaint. I had I horrible birthing experience too. For some odd reason the hospital departments don't communicate properly. I was passed the 42 weeks, told I going down to have an emergency c-section to end up going down stairs and no one be informed to only be rushed into a emergency c section the next day as a doctor from upstair came and was like I sent her down here to have a c section yesterday. Bear in mind I had already been in hospital for a few days at this point as I was induced. To then find out I had and infection somewhere so had to stay in the hospital for a further two weeks. But the mother and baby unit wasn’t informed this and didn’t believe when I told them. So I wasn’t given my own section which they normally do for people staying for a long time as it’s quite emotionally draining seeing people able to go home with there new born and I was being told daily I would be discharged to be told at the end of the day they need to do further investigations and at risk of sepsis. Tbh there was so much more but its incredibly draining but the truth is my hospital is rubbish and have consistently not had the best experience with them. and my GP used to be lovely and happy to help since lockdown he has lost his spark and doesn’t seem interested sounds incredible moody and tired of his job.
Also you should be checked for low platelets. Immune thrombocytopenia, ITP (autoimmune low plates) often goes along with Lupus. I have had it for 12 years and am always bruised.
I was accused once of self-harm by an ignorant arrogant nurse. I had a rash in my ear that was bleeding, she couldn’t diagnose the rash and blamed me for the bleeding. It was clearly on my record that I had thin blood/low platelets. I discovered on my own later that the rash was eczema caused by wheat gluten sensitivity.
Hi there I just wanted to add my support for you and sadness this has happened to you. I have experienced medical gaslighting for years its affected my mental health. I still panic every time I see a new Dr. When I was very anaemic and bruised easily, every blood test I had would cause bruising, I had a nurse tut at me shaking her head and say 'why on earth would you do that to yourself' !!
So many other examples I could share, but the most important thing is that people are called out on this kind of treatment, because its not ok. Living with a chronic unpredictable illness is hard enough, being gaslighted into thinking you're making it up, self harming, going mad is just not acceptable.
I've wrote to my PALs department multiple times. Finally after 2.5years of asking my local ICB agreed to transfer my care to another hospital - never looked back! Sadly it took nearly 10 years.
Sorry to hear it has taken so long for you to be taken seriously. I feel the NHS is doing us a disservice as they are meant to be helping us live with our diagnosis not making it harder. Thank you for your words of encouragement and I will continue to escalate my concerns.
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Do I give up on healthcare altogether and search for other health and care alternatives. have now lost all faith in the medical profession.
Still screaming into and now punching my pillow 😠
Update on worst week ever...
A little update on my previous post and many thanks to those who responded.
