patient and doctor experiences

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Shine A Light

To quote the band Banners, “Light will lead the way, will set you free.”

Today I just got a bit of light back in my life ✨

I met with my doctor and she has agreed to be primary care physician and to continue monitoring my condition. She was the same doctor who looked at my ECG that the practice manager I saw previously scoffed at, and said “you need to go to hospital—today”.

She won my heart just a little more when I told her the hospital was struggling to get me booked in for a CT scan so one of the doctors started suggesting my problems might be mental… she gave the biggest eye roll, they almost did a 360.

So, Doctor Sarah, this light is for you from this grateful patient, whose shook faith in humanity you have helped to begin restore.

May there be many more like you—our community sorely needs it ❤️‍🩹

#Hope #WhereHopeGrows #HeartConditions #HeartCondition #Arrhythmia #PatientAndDoctorExperiences #MightyMoment #MyalgicEncephalomyelitis #ChronicFatigue

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Three good days

About six weeks ago, I finally confronted my doctor about his poor listening and how very unsafe I had begun to feel with his caring for my mental health. He was (predictably) not terribly receptive, but he did finally agree to decrease my anti-depressant dosage. The high dosage had led to my inability to accomplish almost anything because I couldn't think or move or understand things. It was bad.

So tapering off was a painful period with physical, emotional, and psychological symptoms. But then I woke up last Sunday at 8:30am without an alarm clock and started thinking (with positive motivation) about the things I could do with my day. I had three days with this calmness and positivity. (Then things went a bit downhill again today.)

It makes me angry to think that I thought I was just super depressed when it was actually my medication making everything worse - and my doctor didn't do a thing to make sure to understand my experience. Even when I told him I had increased thoughts of suicide, had to contact a crisis line several times, and had to take time off work, he just responded with "ok, so I'll give you another three month prescription."

I am currently on a wait list to see a psychiatrist and another wait list to try to get a new doctor (big shortage of both around here). I see a therapist every two weeks (as often as I can afford) and I am so thankful that she was the one who helped me to see how overmedicated my brain was. Hopefully better things are coming.

#MentalHealth #Gooddays #Depression #Anxiety #Trauma #SuicidalThoughts #Medication #PatientAndDoctorExperiences

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What is this group about? #TBI #CervicalDystonia #Neuropathy #ChronicEpsteinBarrVirus #DoctorVisit #PatientAndDoctorExperiences

You can see this group is about anything. I wish it wasn't! I didn't put Childbirth, as I don't think it applies! lol. But one thing is...you can't get well or better if your doctor doesn't understand. You know that! Don't be afraid to search for one who does! I AM NOT A DOCTOR, but I've been in the medical field 20 years before disability. I've never stopped. Advocacy because of my love. While I am weary and have shut down many sites, I love Mighty so here I am.

If you have questions, I beg you to be as specific as your comfort level allows. (regarding the relationships) There are ways to make your visits rewarding and helpful for getting better. I can attest to this. I've lived through things that are a bit shocking, but having the right doctors and mind set, is what saved my life. I am recovering from something now, so thanks for your patience.

Something we have known for a long time, but it's not spoken about. Again, I do not "bash", but I urge you to go with your gut. Harvard found (as if it was new) the 3rd leading cause of death. And many believe it is higher, as most are unreported. This is not to scare, but to inform you in all honesty, you must be involved in your care. Trust, transparency etc... is a must. I will do a video to show what is needed for doctor visits at another time. Please, it's your life, and make it worth getting better!

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Patient abandonment #ethics #PatientAndDoctorExperiences #PatientAdvocates

Who to Contact when hospice says they’re coming to evaluate while patient organs maybe failing and never show up. Hospice said they were coming and just never showed up. Told us they were doing us charity. I don’t even know how to fathom or handle this#neglect

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Just need someone to hear me and understand

I am sitting in my chair at the house with my loving loyal dogs with tears streaming down my face. I don’t think I even can explain all the emotions I am feelingrifht now. I am just home from another doctor appointment who was very pleased with themselves when they told me (one of so many) how healthy I am and how fortunate I am because all of their tests and questions lead to finding nothing. I am happy yet also furious. No one wants to help me figure out what’s going on with me. Just tell me to exercise more and things would be oh so much better. I have had the same basic symptoms come and go for 10+ years with the last 2 years getting so bad I have had to give up teaching and wasn’t even able to do it part time or anything else I trieed. Physically and mentally, I guess I just feel broken. The symptoms get worse and new ones add on. And I am so emotionally exhausted from the pain and the fact that I can’t do the things I want to that I am constantly angry at the people around me and feel worthless. I am seeing a therapist but haven’t found one who’s been able to help me cope with this part of my depression. My family loves me and provides the only support they k ow how. But I can’t take another well that’s wonderful they didn’t find anything wrong. I am screaming silently with frustration and pain and the agony of people’s expectations of me because everything’s “ok” me you look great this is the first time I posted and This is probably rambling but I just needed to get some of this out of me. Thanks for listening to my rant.
#FibroFog
#Depression
#HemiplegicMigraine
#Not understood
#angry
#PatientAndDoctorExperiences
#invisibledisabilities
#ADHD
#alonebutnotalone

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Just found out after two years that I have Lyme Disease!

I was 15 when I had woke up one morning with severe pain all in my stomach and back. After a few days this pain just kept spreading and eventually got to pretty much every part of my body! To sum it up it’s easier to name what doesn’t hurt!! I had many other things like headaches, swelling, poor circulation, brain fog etc... I went to so many paediatricians, speacialist, my family doctor, naturopaths, iredologist, physiotherapy all after I was diagnosed with Fibromyalgia by the second paediatrician. I had a doctor tell me it was in my head, i had another one who was in her 60’s compare her back pain to my full body pain and other symptoms and actually believed it was the same thing, and I had doctors ignore my words just because they believed it was from my mental health issues! After I was diagnosed I did excercises, physio, took medication keep in mind i could barely move from the pain and stiffness!! I started going to naturopaths after a while because medical doctors just weren’t doing anything. I asked my family doctor to test me for lyme disease after naturopaths, friends, and family had all said it sounded like Lyme. So months went by after my family doctor said no to testing me and I finally decide to start looking for more naturopaths and my mom discovers a family friend of ours has a sister who’s a naturopath she set me up with another naturopath who speacializes in viruses which is what she thought it was! I finally started to get answers after going to her. I just yesterday found out I have Chronic Immune Supression, Lyme disease, and two co infections with the lyme disease! It has been such a frustrating journey but I am finally on the right path to getting better!!! #LymeDisease #PatientAndDoctorExperiences #doctorsdontlisten #DoctorsAreDickheads #doctorsdontlisten

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Have you been dropped as a patient since January 2020? If so, what was their reasoning? It's a pandemic. It's not OK.

My fiance recently recieved a letter telling him his provider was dropping him as a patient due to nonpayment. This despite him having paid his then due balance in April.
He recieved a letter with less than 30 days notice of dismissal. He also called the office's billing department multiple times. Luckily, I had documentation of his to back him up and reversed the dismissal. But this leaves me to wonder, how many others have been dismissed DURING A GLOBAL PANDEMIC?

Most specialists take at least 6 months to get in to see and right now those times are even higher in many areas. Not to mention the fact that we have not had any government assistance of any sort since the initial stimulus payments. People still have reduced hours, our job market has fallen below what it was at any point in our nation's history, and congress sits on their thumbs as if everything is just fine and dandy as real citizens and noncitizens are suffering greatly.

This pandemic already has people's mental health in turmoil and will for quite some time. This is not OK. There needs to be consumer protections during the Pandemic for things like this barring physicians from turning anything into collections until such time as the order is rescinded no less than 2 years from the date of passage. I mean even student loans are suspended currently and not being turned into collections! You could even just make minimum payments equal to one dollar for patients without penalty if they can't afford that either. This gives jobless, patients having to stay home with children for school or childcare, struggling, disabled, and other patients and their families the chance they need to get through this and still have the care they need.

Dismissing a patient during a pandemic for any reason other than abusive behavior towards providers and staff is unconscionable. It is a special sort of evil and a betrayal of the oath a physician took to begin with. Do no harm. It does not say do no harm unless the patient needs to hold off or is late on payment during during the Pandemic. This is just that, a pandemic. You do not discharge someone for monetary reasons when the nation is struggling like this. You do not discharge when a patient has been a decent, well paid (including or not including just making payment plans with providers). You do not throw a patient into anxiety attacks, fear, suicidal ideation, and further distress by removing part of their already crumbling or stressed support system during this pandemic. If you're an office manager and you have failed to change policies and are just going about business as if nothing is different, you need to reevaluate your approach to the practice. It is hurting people. Talk to your providers. Change needs to happen yesterday. #covid19 #PatientAndDoctorExperiences #PTSD #MentalHealth #ChronicIllness #MightyTogether #MightyQuestions #MedicalProfessionals #MedicalPtsd #Trauma #CPTSD

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#CheckInWithMe #Disability #Wheelchair #Pelvicpain #PatientAndDoctorExperiences

COMIC STRIP
A Day in the Life of a PWD

Frame 1:
A woman who uses a power wheelchair is laying on an exam table in a doctor's office.
DOCTOR: Good morning. I'm Dr. Crane. I'll be doing your pelvic exam.

Frame 2:
DOCTOR (preparing): Are you nervous?
WOMAN: Not really

Frame 2:
DOCTOR: Oh. I am.

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Have you ever been to a pain specialist who does random drug testing, and who won't let family back with you – regardless of COVID-19?

I recently moved across the country, and had a pain management doctor in California. Now, I'm getting more and more established in Nashville, where I currently live – which means finding newer doctors. Yesterday, I tried a new pain specialist...Where I was told I would be randomly tested for drugs, and no family would be allowed back with me in any situation.

Have any of you experienced this before? Is this normal where you live?

I didn't experience these rules in California, so I'm wondering if they're a norm elsewhere?

#ChronicPain #P  #Medication #PatientAndDoctorExperiences

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