Upset with Healthcare

I'd like to be treated as a person, not a malfunctioning machine.

I don't expect a doctor to be my best friend, but at least being supportive would be nice.

And giving sarcastic replies to my comments is right out. Being disabled is not a joke.

I really like the book MAYO CLINIC ON CHRONIC PAIN. It was my Bible for many years before I found this site last year when I was looking for support for breast cancer. I pretty much tried every suggestion. Some approaches worked better than others, and I settled into a personal regime tailored to my needs.
It is difficult to get help for pain. Until I had a cancer diagnosis I couldn't get the full dose prescription of pain killers I needed for 50 years of chronic pain (unrelated to the cancer! So the cancer had a silver lining.)
I have found it best to look for most of my support outside of the medical system, although I have a good PCP. By this I mean I focus on DIY in terms of exercise, meditation, therapy, and emotional support from friends and family. It helps me to realize that my problems are hardly unique--every person on earth is suffering in some way. I know I'll never be pain free but I'm glad to have many functional hours a day. I know I can't "solve" the problem but have found ways to better live with it. What do you like to do that is possible? Try doing those things a little each day. It helps me to not just be defined by my ill health. Take care.

It is frustrating. It seems most docs think we are just complaining about getting old and need to suck it up. I also wish they would listen more and help us understand what can and can’t be done to improve our quality of life. I just keep trying to communicate the best I can and will continue to tell them what is going on every day in this body even if the tests they do don’t indicate that something is not working right. The functional hours are definitely a plus and help get me through the rest. I enjoy being with my family and friends, music, finding and reading good books, and sewing.

It is all to human to place the sick in a group of: them. Providers are, in my experience, all to human. Few providers are capable of true empathy and compassion, they are just to worn down. I often feel like they just want me to go away. So, I ask them; "should I just die and get this over with"? Frequently, this question gets their attention. Another comment I have used is; "I'm sorry I'm such a pain in the ass but I am fighting for my life".

Providers care or they wouldn't have chosen the profession they are in. They just sometimes forget we are people not problems to be solved. I try to remind them that I am a person. In my experience they usually give me at least an extra moment.

All patients have to advocate for themselves. Sometimes quite aggressively. When my mother-in-law was dying her ex-husband who is a doctor told me, "you have to advocate for her, don't let them make you back down, if you don't no one will". And they didn't even speak to each other. But he knew how the system worked. This was twenty years ago and it hasn't gotten any better.

When it comes to mental health the ongoing stigma can make it even more difficult. My own desire to down play how much I am suffering and my ability to keep functioning even when I am in utter despair can lead to me being ignored. I have learned that I have to do whatever it takes to get the help I need, even if that means being a pain in the ass. I am polite but persistent.

I find it also helps if I have done my homework and all the wellness actions available to me. If there is something I can do to get better, I do it. I mean everything, diet, exercise, meditation, journalling and never ending research into my conditions. If I expect my providers to work for my wellbeing I will show them how hard I am will to work to get well.

It is my life, no one is going to outwork me! If I don't make it, it won't be because I didn't try.

One of the additional benefits of working hard and doing my homework is that my providers know I am keeping track. That I will check all their recommendations and I will hold them accountable if they don't do their best.

Does all this work all the time? No. I still get dismissed. I still get frustrated with treatments that don't work. And I still want answers on what is and has been going on with me. At least my providers sometimes say "I'm not sure let's try this and see if it helps".

I am creating a company that will provide patient medical research to individuals and their providers. Maybe armed with more information we can all get better answers while showing our providers we can do our homework too. More than once, I've told my providers things they didn't know. That's one way to get their attention.

I hope everyone lives in good health and peace.

I am sure that every person here has a story about healthcare and how it affects them. What I do know definitely is that since being diagnosed with systemic lupus in 1988, when it was not an easy condition to track down, I have had to diligently advocate for myself and my health. If that meant standing up to the medical doctors and saying, "prove it" or doing my own research, respectfully suggesting they were incorrect in an assessment, it always has meant taking an active role in my own healthcare. What has that earned me? A label of "involved patient", sometimes raised eyebrows as they consider my thoughts, but always I feel better for being up front.

We owe it to ourselves, and really to the medical community, to not be a doormat. Just my humble opinion....
Ginger

I agree with your perspective and being proactive regarding your care. I would think doctors would want patients who are knowledgeable about whatever they’re seeking care for. People are educated, read, and can comprehend. I’ve also had the experience where I felt I was labeled the problem patient as I do express my opinions. Guess you move on to another provider when that happens

What has really helped me is learning to plan my conversations with my doctors and healthcare team when possible. There is a site that offers some suggestions that I've found helpful in the past - https://www.patientrevolution.org/tools.

Doctors have very little time per patient. If I have questions i go to an office visit with a list of questions.

I ask questions like: "What can I do to increase my chances of survival?" The answer was: "Take the medications, and show up for all your appointments."

A question I might ask is: "What can I do to help you with my care?" or "What do you want me to do to?"

A continuing issue for almost my entire life .. some major drug reactions during procedures --- sadly the diagnosis was that "it's psychological" different situations different medical people -- different drugs. As time went on. in each case, history showed these would fall in the category of "Big Oooopppppps" They were wrong every time --- try Thallium on for size which was used in a heart procedure or Novocain with two incidents that could have killed me.. I went to Mayo on and off over time, Mayo was the first medical org that acknowledged issues with Novocain up to and including in their formal intake documents -- thus the reason I started going there more often. This has been a serious challenge for years.

What you wrote definitely resonated with me. I started losing my hair. I think part of it is age (I am 89) and part of it is stress and grief over the loss of my husband. I saw a dermatologist who told me she was "the hair expert." So that so-called expert did a biopsy and gave me a medication that caused an allergic reaction. I am now seeing a different dermatologist. He basically gave me the same medication, but in a pill form. It kind of makes me sleepy. But that reaction is denied by the professionals because it is not listed in the side effects. So then I tried research. And guess what I found on the Cleveland Clinic site. They discussed exactly what I am going through. They also discussed what caused this. I started following the dots and I have all the dots except one. This is a malfunctioning thyroid. No doctor ever suggested checking my thyroid. I have a follow-up appointment on January 29th and you can bet I will be having a discussion about this.