A Doctor’s View of Patients with Chronic Disease

[UglyGreed]

You scare doctors. No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.

We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do — most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder — your defining pain — is something most of us don’t regularly encounter. It’s something most of us try to avoid.

http://updates.pain-topics.org/2013/06/a-doctors-view-of-patients-with-chronic.html

[bigwillq]

1. Oh, so is that why they act like nothing's wrong and we're just making it all up?

Gotcha.

[UglyGreed]

2. I'm just trying to figure

it all out my friend, wondering why some are allowed to wallow in their pain year after year.

[cali]

3. "You know more about your disease than many of us do"

That's certainly true in my situation. Many docs have never even heard of Complex Regional Pain Syndrome aka Reflex Sympathetic Dystrophy.

Fortunately, in my case, because the physical symptoms, beyond the pain, are so easily apparent, I've never been told "it's all in your head" or looked at with dubious eyes.

I've done more to manage my condition than the docs.

[NightWatcher]

4. Preach on! My Doc treats me with distrust and often contempt.

Then when I have the nerve (HA, a joke because peripheral neuropathic pain is one of my 'gripes') to ask for a pain medicine, strike that. When I have the nerve to ask about other forms of pain management, she just pushes muscle relaxers, opiates, or wants to hand me off to my general doc on the floor below hers to push something else. I cannot exist on muscle relaxers and opiates for the rest of my time. She found out that I went to see a doc at Mayo about one of my other conditions and wanted to know if they agreed with her or criticized her treatments.

I have a weird combo of autoimmune/neuromuscular/nervous system diseases and interactions. I know more about myself than any of the Docs I've seen. My diagnosis was acquired over a ten day hospital stay that resembled an episode of House (except in my case it WAS lupus....)

I don't get the "I wish I could cure you" vibe from my doc. I get the "you're going to have this and there's little we can do till you die...whenever that is, so pay your bill and I'll see you again in 3 months" vibe.

[Dorian Gray]

5. I know it's not always

easy, but can you find another doctor? Because nobody should be treated that way by a health provider.

[NightWatcher]

6. I'm in the process of finding another Dr or trying to find a way to keep going to Mayo

Mayo kicks ass, but costs an arm and a leg.

[winter is coming]

17. In my experience, you go through cycles of that.

You'll visit various doctors, hoping for new answers (any answers) or better treatment, and settle with one for a while when you've lost energy for the search. Because every doctor visit has to be paid for, and not just with money. You have to find the time to go, and often have to make up for the lost hours somewhere else, which means you don't get the rest you need. And if you have a chronic condition, there's a good chance you're always tired.

After a year or two, you reach often your limit with whatever doctor you're seeing and start the cycle again. Hours in waiting rooms and exam rooms, the patient history forms that no one reads, the doctors who behave as if you're doing it for the attention. Because, you know, there's nothing I like more than the attention of being treated like shit by someone I've never met.

[UglyGreed]

7. You know more about your disease than many of us do

same here but I learned to keep my mouth shut and just show my wife online when we get home. Right now I am suffering from shunt malfunction yet the doctor has blamed other things. Who I am to disagree?

[Ms. Toad]

10. Please don't.

Doctors both need our knowledge - and the humility they gain from having a conversation with a patient that is much closer to peer to peer than they are used to.

[UglyGreed]

20. I understand what you

are saying but after awhile of being ignored or told you could go to a church or a synagogue nothing will help you it gets to you.

Never mind going to an appointment and the doctor accepts a call and tells the caller that that women is just a complainer and other things. He sent me for a MRI, I go back to him only a day later he tells us that he forgot to take notes of the last visit.

Asks to repeat my symptoms , cuts me off and once again accepts a call from his wife to discuss their dinner plans, watching soccer with his children and how much should they donate to a local aquarium. Then after all that he says I'm depressed and see you in six months.

I left the office in a hurry since my headache was getting really, really bad and I vomited in the car on the way home and several times once I got home and passed out.

This surgeon is the same one who made my family and I wait nine hours in pre-op and did not even have the courtesy to visit me after the operation which I truly believe he had the Resident perform.

I am now waiting seven days to see if some other doctor will take over my case. Even before I get to see this doctor I needed to release all my information and they will see if they want to take me as a patient. Never a dull moment, sorry if this written poorly but it is very hard for me to gather my thoughts at this time and need to take long breaks even if I am just ranting on DU.

[jwirr]

8. My daughters doctors often acknowledged not knowing how to care for her. We learned together.

She was severely disabled since birth and still lives. There is nothing worse than a doctor who does not know and just prescribes the latest wonder pill.

[UglyGreed]

9. Sorry to hear

about your daughter as it must be very tough to watch and care for your child who is suffering. A good friend of mine has a child who has a very severe case of cerebral palsy and have never put him in a home and still takes care of him even though he and his wife are in their 80s. I don't know how they do it year after year and I commend them on their loyalty and love for their child.

As for your wonder pill comment, I don't know if it is a dig or what, (one becomes very thin skinned after years of being labeled and/or dismissed) but in my eyes nothing is worse than doctors who just gives up trying to help because the patient's case is difficult or it may harm their reputation and ego.

[jwirr]

12. I guess I did not make that statement very clear. We never had one of those NEW pills that did not

end with her in the hospital for dehydration. In fact one of the doctors refused to listen to us about what it was and if another of our doctors had not stepped ahead she would have just kept suffering. Because she has some real digestive disorders along with her seizures she cannot take most medications. We are just fortunate that we found a few old ones that work for her.

I took care of her in my home for 45 years until I could no longer lift her to change her clothes and get her out of bed and into her wheelchair. Even a hoyer needs some lifting to position the patient on top of it. Fortunately I was able to teach the foster family that now cares for her and they still call for advice now and then. That is a lot easier than putting a family member in a home that you know very little about. She is now 57 years old and when she was born they told us that she would not live over 30. They were wrong. And I thank God for that. God and some really good doctors.

[UglyGreed]

13. I never knew

that a person could be placed in a foster home at that age. I have tons of respect for you, not only taking care of daughter for so long, but being able to realize that you could not give her the care she needed. My God that must of been so hard. You are a true hero!

With the medication, I thought that may of been the case, but as you can see many people are on a witch hunt, including some doctors and other healthcare professionals. Thank you for the replies.

[jwirr]

16. Thank you. Here in MN we have adult foster homes for the Developmentally Disabled. And thank God

we are starting to open homes for the mentally ill. They are all community based so they are for the most part close to family and have local healthcare professionals. No hero here - I loved taking care of her and would be doing it yet if I could.

[UglyGreed]

18. That is wonderful

much better than an corporate approach to helping those who are in need. Some parents give up taking care of their healthy children no less one with an illness, you and the foster parents are heroes.

[Hortensis]

11. Thanks for the really good article, UG. His final suggestions for patients are really valuable.

[UglyGreed]

19. No problem

thanks for the reply

[HereSince1628]

14. It's interesting how the Dr voices the concerns of many that are dismissed

in Paramedical Discourse (the conversations/narratives that surround experience with medicine).

When I notice my caregivers discomfort and resort to guessing about what to do, I am discounted as a person with a personality disorder "resistant to treatment".

IMO, there are certain exposures of letting medicine be only responsive to the messages it 'wants' to hear.

[liberal_at_heart]

15. "You know more about your disease than many of us do — most of us do."

That is so true. My husband has a few chronic diseases and because he is the one living with them day in and day out he knows his body pretty well. Luckily he has doctors that are not afraid to get his input on what he feels his body is doing.