PatientsAreNotFaking

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When the patient is the expert in the room

themighty.com/2019/11/rare-disease-parent-expert

I've often sat in a doctor's room where I felt like I wasn't being heard. Often a rare diagnosis means you are the expert dispelling biases and disbelief. Have you ever been in such a position? What strategies have helped you cope?
#PatientsAreNotFaking #RareDiseases #bias

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Trending Twitter topic: #ChronicIllness #ChronicPain

Have you guys seen this on Twitter?!? This is a nurse who is coming under fire for posting a TikTok video to Twitter making fun of patients who “fake” illnesses, pain, etc. #PatientsAreNotFaking is #5 trending topic on Twitter because there’s a LOT of people upset by this. So many of us have problems being taken seriously with #ChronicIllness #ChronicPain #MentalHealth #InvisibleIllness #Fibromyalgia #Lupus #BackPain #Anxiety and other things we struggle with DAILY!🤬

Many of us are accused of being hypochondriacs or drug seekers when in reality we are trying to get someone to help us or someone to listen! The nurse in the video is defending herself, citing that she is a nurse who likes to make her patients laugh and was just being goofy and exaggerating to cheer up those in need of it. I am very relaxed and not easily offended whatsoever BUT I also read some of the stories shared on Twitter of people’s deadly experiences. People’s experiences with doctors or nurses not believing them or making judgements and missing something huge.

I know I’ve experienced this myself. I have a VISIBLE injury and still have been doubted, called a drug seeker, overlooked, brushed off so many times. August 2018, 1 week after my third back surgery, I was hospitalized for 9 days for excessive vomiting. It was a 360 fusion meaning they operated to secure broken hardware through my back and stomach. I was not hospitalized much at all before this... I was given two drugs (should not have been given together) by the hospital that gave me #TardiveDyskinesia for 24 hours. The nurse was new and kept running out my room, doing nothing and they wouldn’t let me see a doctor!!! I was still vomiting, terrible post op back pain and had 17 staples still on my stomach from surgery and now had this. They left me alone! I was crying, I couldn’t speak, I couldn’t see straight, my heart rate was off the charts, I was in pure panic and I wasn’t in control of my body.
No one was helping me, I thought I was going to die or be stuck like this forever. The hospital did not catch the drug interaction but rather my dad did, after tracing back every single drug (he’s a pharmacist) and ripped out my IVs and gave me Benadryl. He saved my life!!

I’ve never been so scared to be in a hospital in my life and have always implicitly trusted health care professionals but this completely changed my view. They didn’t listen to me! And this isn’t even all of the drug seeking comments I’ve heard over the years. Now I’m also being diagnosed with an autoimmune disease but have amazing doctors helping me thankfully. But I know so many don’t. 😔

But so many of us are doubted, laughed at, dismisssed, etc while we are suffering and it’s a HUGE problem. I’m all for a good joke but I feel as if this crossed the line, for me! I wanted to hear your thoughts on this topic and any experiences with this you wanted to share!Youre the strongest people I know 🙌🏼🙏🏼💪🏼
#ChronicIllness #ChronicPain

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