Advocating for yourself? Just what does that mean?

Dr Gary
By Dr GaryCA Latest Reply 2016-01-29 21:19:10 -0600
Started 2016-01-23 22:37:50 -0600

“Advocate” is one of those terms I hear tossed around a lot, by my clients, by other professionals, and in articles I pick up or see online. It seems like a lot of members here use that term, too. And I use it a lot myself.

I’ve seen the word advocate used all kinds of ways, from getting information to getting up in your doctor’s face.

Here how I often see advocate being used:

• Getting informed about your condition and its treatment

• Asking healthcare professionals questions and expecting answers

• Getting a second opinion before you make a decision

• Understanding what services are available to you and making sure you get them

• “Standing up” to your doctor when you don’t feel you’re getting what you need

Here’s a link to an article I recently posted:

http://www.diabeticconnect.com/diabetes-infor...

If you’re talking about being an advocate, what’s it mean to you?

And if you’ve become an advocate, what did it take for you to get there?

Tired of talking about being an advocate? Why?

Looking forward to hearing from you on this one!


45 replies

Anonymous
Anonymous 2016-01-26 22:38:22 -0600 Report

I wish I could be as strong, confident and intelligent as most of the posters here. I manage my health care, but by no means am I any kind of advocate for myself or anyone else. If anything, I am overwhelmed, overloaded with information, frustrated, depressed…the list goes on. I ask questions of my doctors but I could never question their therapies out loud to them. Confrontation is not my forte - I get tongue tied and can't get a sentence out correctly and end up sounding like a fool. Insurance forbids second opinions only because I hadn't met my $6400 deductible so would have to pay out of pocket. I honestly wouldn't know what to do with a second opinion anyway. I read all I can get my hands on but understanding it is often an issue. I've changed my eating habits, reduced stress, take meds regularly…basically do what I'm told. Two years in, my numbers continue to rise despite my best efforts. I know…suck it up and deal…be strong…it'll get better. Advocate? Nope. Not even close.

WASHED OUT
WASHED OUT 2016-01-28 19:27:19 -0600 Report

Don't get stressed about losing control of your numbers, because most of us also have that problem. About 1/2 of the people diagnosed as type 2 will progress to the point that they depend on insulin. In many cases this wasn't caused by anything we had control of, because it is genetic. Many people are carrying the genes to loose autoimmune disorders or disease. Some of those who have developed diabetes will be come type 1.5 sometimes called LADA . The LADA person's body is literally progressively attacking and destroying the beta cells in their pancreas lessening the pancreas ability to produce the hormone insulin. When it falls beyond what the body needs to effectively use the glucose sending it into muscle tissue as energy they become dependent on man made hormone injected insulin to unlock the muscle cells to accept glucose as energy. Without glucose and without the hormone insulin we die. Insulin unlocks the cells to be able to use the glucose and every muscle in our bodies depend on that energy to live and move. The heart is the major muscle we thrive on, people who are so insulin resistant and those who don't produce enough if any insulin starve their bodies muscles of glucose. You may have a high level of glucose in your bloodstream but without that hormone insulin , then it can't be used. High glucose floods our veins and arteries traveling throughout our body causing inflammation and damage to organs , joints, eyes, nerves, kidneys, liver, heart circulatory system especially to our bodies extremities. These are the complications of diabetes, each time you allow glucose to go high you get a little more progressive damage. The longer you allow it to stay there the more speedily the complications progress. It is sort of like a speeding car, it takes time to get up to speed and it takes great effort to slow or stop it. Some say anything over 120 blood glucose causes damage, but most medical journals raise that amount to 140 blood glucose.
My main point before my rave, is don't get so stressed about your goal post getting moved just as you were getting there, you have to adapt and have the strength to fight on. I found that figure under the answer to a question on this site, ASK THE EXPERTS, 1/2 of the type 2 diabetics will progress to having to use insulin. You just have to continue using every tool in your arsenal, medication changes or diet changes whatever it takes to stay out of that danger area above 140 blood glucose. No One wants those complications, but those complications are the main cause of diabetic deaths.

suecsdy
suecsdy 2016-01-28 18:46:21 -0600 Report

IMO, if you have changed your diet and you take your meds and things are not Improving after 2yrs, you need to be talking about alternate treatment. You didn't say if you are t1 or t2 but it might pay to get it checked. Just because you were dxd as an adult doesn't automatically make you t2.

sugarfreebarb
sugarfreebarb 2016-01-28 16:53:19 -0600 Report

I agree with Knitting Bubbie…you need a muscle man, or a muscle woman. Someone who doesn't have the same anxiety about dealing with doctors.

Knitting Bubbie
Knitting Bubbie 2016-01-28 05:43:44 -0600 Report

I wonder if it would also help to bring a relative or close friend with you to a doctors appointment. My husband has come with me sometimes and asked relevant questions that I didn't think of. Good luck.

Dr Gary
Dr GaryCA 2016-01-27 22:40:33 -0600 Report

Hi Anonymous, I am glad you checked in. I can feel the frustration in your words, and I can understand why you feel this way. I am wondering if it might help to come to your doctor's appointment with a list of questions. Not a long list, but maybe 4 or 5 or so. Briefly tell your doctor what you have read and get his/her opinion, or print it out and hand it to your doctor. Ask questions about what you should be doing. Ask what the two of you can do about your rising numbers. I know it's not easy to speak up, but having that list with you might help. You might want to give this a try. You don't have to just suck it up. This is your health, and you're important.

haoleboy
haoleboy 2016-01-26 11:02:44 -0600 Report

I almost got thrown out of my doctors office for dropping an "F bomb" while I was over-enthusiastically advocating for myself.
Probably terribly inappropriate but, I now have a good working relationship with my doctor as she clearly understands my passion about my health and the care/advice I receive.

Dr Gary
Dr GaryCA 2016-01-27 22:34:49 -0600 Report

Hey haoleboy! Uh oh, I bet that one didn't go over well with your doctor. But it sounds like you worked it out. I think it takes a strong and self-confident doctor to recognize that the patient's frustration comes from a place of passion about their own health, and not to take it personally and shut down. Thanks for sharing this.

haoleboy
haoleboy 2016-01-27 23:13:45 -0600 Report

she actually apologized to me. worked out well as we now have a very functional, working relationship.

" Big Black "
" Big Black " 2016-01-25 18:16:11 -0600 Report

What's recommended and really works for diabetic nerve pain?

Dr Gary
Dr GaryCA 2016-01-25 22:06:30 -0600 Report

HI! Sorry to say I am not a physician so I can't help you with this question. A couple of ideas though. Have you talked this out with your doctor? He/she might have some recommendations for you. You might also post a discussion and see if other members want to share their experiences. Take care of yourself, my friend.

robertoj
robertoj 2016-01-25 16:44:07 -0600 Report

I've had my fair share of problems with the system. If a doctor won't listen it doesn't matter and since getting in their grill isn't an option it's time to get a new one. Mine discusses issues with me. The rest of the system isn't that easy. I get frustrated until someone helps me.

Dr Gary
Dr GaryCA 2016-01-25 22:04:40 -0600 Report

Hey Roberto! It's been awhile. Nice to see you. Glad you found a doctor who is willing to talk things out!

sugarfreebarb
sugarfreebarb 2016-01-24 22:37:28 -0600 Report

Advocating for myself meant ditching the doctor. When I was diagnosed he handed me a script for insulin and metformin. Sorry meds are not my FIRST line of defense. If I need them in the future I will keep an open mind. For now I have managed to get my BG in line through dietary changes. I am interviewing a new doctor this week. I need to make sure he/she ( I don't even know I just have a name) will need to be on the same page as I am. Medicines are for conditions that can not be successfully treated in any other way.

Dr Gary
Dr GaryCA 2016-01-25 11:23:49 -0600 Report

Hey sugarfreebarb, great to hear you have been able to manage your diabetes through diet. That's excellent. Another good example of doing your research and partnering with your doctor.

Kalisiin
Kalisiin 2016-01-24 22:11:05 -0600 Report

Dr Gary,
I advocated for myself with my endo and my dietician.

My endo wanted me on insulin right away, I said no. And she was pretty insistent…I was more so.

I told her if we didn't see an improvement with diet and exercise and metformin, and Intermittent Fasting, we would reconsider then.

She agreed, and six months later, I was 8.5 points lower on A1C.

My dietician was really not cool with my doing Intermittent Fasting…nor with my doing LCHF…and only doing three meals a day, no snacks.

I dunno WHY these people want us to have NO BREAK from the constant barrage of insulin, by having us eat and eat and eat all the time…they are SO AFRAID of us getting a hypo they would rather us be sky-high and get complications…it makes no sense to me…seems to me they are more worried about a potential malpractice case than our actual health and well-being.

Dr Gary
Dr GaryCA 2016-01-25 11:18:29 -0600 Report

Hey Kalissin! That's a really interesting story. i do think that many medical professionals are afraid to veer off the best practices script and, as a result, are resistant to non-medical interventions. I would guess that malpractice concerns are involved, though they may have had some bad experiences in the past when patients weren't compliant with medication. As a result, they tend to have a one size fits all approach to their patients' diagnoses. I am really glad to hear you have had such great results. Excellent!

Just Joyce
Just Joyce 2016-01-24 19:56:36 -0600 Report

Dr. Gary,

I rarely have to advocate for myself. My doctor and I are almost always on the same page. We talk about my health care. If he orders test I question the test and the expected results. If I want a second opinion he doesn't have a problem getting it scheduled. I know what services are provided and have access to them if I need them.

The one thing I can say is he knows I ask questions and he doesn't have a problem answering them. In fact when I see a specialist I ask them questions because I do my research prior to seeing them and go in with questions. I won't allow them to blow smoke. I have discovered that doctors are willing to ask questions if they know the patient is asking legitimate questions and are someone informed.

I have met quite a few people who claim they are advocating for something only to find out they could not find their head in a mirror. To be an advocate, you have to know what resources are available and where to get them. You have to know who to contact when you need help. You have to know answers to questions people ask. You have to be persistent and passive aggressiveness does not always work. You have to be strong enough to stand your ground and not take anything personally if you are advocating for yourself or someone else. You have to be able to take the good with the bad.

My sister had a tiny heart attack in October. The first hospital the ambulance took her to was top notch. When she had the second one the hospital she was taken to is basically a dump and it was on a Sunday so I had to wait until Monday morning to go into action. The hospital does not have a cardiac unit and the previous hospital's ER was packed.When the cardiologist came to see her from another hospital he asked me if I had questions. I said yes. How soon can you transfer her to the other hospital. He said he didn't think he could do it. I said yes you can and I expect you will do it because you really don't want a lawsuit. Her room was disgusting. A nun asked me in the hall if my relative was comfortable. I asked her how could anyone be comfortable in this dump. Her room needs to be cleaned get it done today. She had a problem getting medications. I called the Nursing Director. She said we take good care of their patients. I told her I wouldn't put a Baltimore City Rat in her hospital. It took them 24 hrs but my sister was transferred out of that place. My sister and her roommate never took off their jeans. Her roommate was trying to get out of the hospital and transferred to another. If you don't stand up for something you will fall for anything. I will stand up because I really don't fall for anything.

Dr Gary
Dr GaryCA 2016-01-25 10:54:25 -0600 Report

Hey Joyce, nice to see you. I know you are an empowered person, and that you wouldn't settle for any less than a doctor who is willing to team up with you on your health care. That's great to hear you and your doctor are so in sync with each other. I suspect he enjoys working with you because you are so well educated and involved. Ultimately, that makes his job easier because you are partnering with him. As you said so well, the better prepared patients are with their own research, the better the questions they can ask. And yes, advocating for yourself is also about being aware of the resources, a step that so many patients don't take on their own and instead depend on their doctors to do for them. That is a very good point. Wow, that is quite a story about your sister. I have heard similar stories. I always tell people that if they are going to be in the hospital they really need an advocate to make sure they are treated well. Otherwise, they may slip through the cracks. Your sister was really lucky to have you, as I am sure she realizes. Good job. Thanks for sharing this.

Pegsy
Pegsy 2016-01-24 16:20:51 -0600 Report

I am my own advocate out of necessity. I go to great lengths to educate myself as much as possible about my health and choose healthcare providers that respect my need to be in control of my own treatment. From my perspective a doctor is a service provider and I am the consumer. It is not and never should be about following orders from a doctor. It is and should be about being educated regarding my condition and what my options are. All decisions about care should be mine, not my doctors. My husband also seeks to understand what my needs are and he has spoken up for me many times, especially with waitstaff in restaurants or at social events where someone may be trying to push foods that are not right for me. He was my advocate in the ER when I needed him too! Today we went to lunch with friends and we just happened to arrive first. While waiting for the rest of our group my husband asked for a menu that I could look over and take my time deciding so I wouldn't be rushed and frustrated after everyone was seated. That small gesture really made a difference and I was able to enjoy a healthy meal and have a relaxed visit with our friends.

Dr Gary
Dr GaryCA 2016-01-25 10:42:05 -0600 Report

Hey Pegsy, that's a very empowered approach to your health care. I always encoourage the people I work with to get really educated on their condition so that they can hold their own in a discussion with their doctor and ask good questions. That's what teamwork is all about, listening, give and take. Nice to hear your husband is an advocate for you, too. Those small gestures mean a lot. Thanks for checking in.

Dayfly
Dayfly 2016-01-24 12:47:41 -0600 Report

I am my own advocate. I research the problem and all solutions and do what I feel is most appropriate for me. It usually is not the same solution as my Dr. has. They have a pill or two for everything as they were taught but if I have more natural options than the side effects from their meds that is my route. I Do that with diabetes and severe osteoporosis. Two years ago a Dr. Laughed at me because I refuse osteoporosis meds with horrid side effects and said I have it worse than they have ever seen and could not do anything to improve it. I am due for a bone scan in 2 months and am sure my efforts will pay off. I can't wait to prove it.

Dr Gary
Dr GaryCA 2016-01-25 10:39:28 -0600 Report

Hi Dayfly! Thanks for sharing this. A good example of becoming an expert in your own condition. I suspect you are your doctor have had some pretty interesting conversations about this issue. I am looking forward to hearing the results of your bone scan, so please keep us posted!

Pegsy
Pegsy 2016-01-24 16:09:00 -0600 Report

I hope your bone scan shows great improvement! I hope you are including resistance training in your treatment of osteoporosis. I believe it has been proven that it improves bone density. My doctor and I may be going the rounds over cholesterol drugs. I just do not intend to go there.

Dayfly
Dayfly 2016-01-27 10:14:52 -0600 Report

I am sure you can improve your cholesterol with diet if you can make the needed changes. I have a trainer now for my osteoporosis and am doing several other things I have read about. One is this expensive machine I bought that is low density vibration which they use on the astranaunts because they loose bone density going in space. It increases muscle mass and density. It is supposed to increase it .8 a year. I know there will be improvement and I will be so happy to prove to these Dr's it can be done without their meds. Many side effects they cause like femur fractures instead of back fractures. My back healed. If I have a femur fracture I would have to have rods And pins too. Can't see that is an improvement.

Gabby
GabbyPA 2016-01-24 11:38:13 -0600 Report

I know there are special advocates who have become experts in who they are advocating for. They know the hoops, the loops and red tape to get through to get the help people need. Those people are key when we run into a very unfamiliar or difficult situation. They know the right questions to ask and how to get results. A good one will go to the doctor with you, help you navigate the possibility of financial assistance, grants and even just be there to hold your hand.

To be my personal advocate, I try to kind of think that same way. Research and becoming an "expert" in my personal care is my goal and that will give me the foundation to ask better questions and to know when I am on the right track for me. I know when I was first diagnosed, I just believed what the doctors said because they knew more than I did...well that changed over the years.

I have never gotten in the face of my doctor. I don't think that is very beneficial in most situations. I will admit that it has crossed my mind however. But I have learned to ask questions that I know the answers to, to see if they know what they are talking about. Sadly, quite often it is not what I hope for.

Advocating and taking responsibility to me go hand in hand. I am responsible for my health, my care, my well-being. If I cannot find it in one place, it is my responsibility to find it in another. And I am totally willing to think way outside the box.

Dr Gary
Dr GaryCA 2016-01-25 10:31:16 -0600 Report

Hey Gabby, nice to see you. I think there is a lot to be said for having someone who can be your personal advocate, whether they are a really competent friend or family member or a professional whose services you are paying for. The system can be pretty complicated and having someone to navigate it with you can help a lot. And I agree, we can learn to do that for ourselves, starting with getting really educated. I think that someone who is living with a chronic condition is an expert in their own right, they know how their body is responding to treatment and they have a sense of whether treatment is on track or not. You're living in that body, the doctor is an observer only. And I agree that getting in someone's face only causes them to be defensive or equally aggressive, and not much gets accomplished. Asking questions is good approach. And yes, it all starts with taking responsibility.

Just Joyce
Just Joyce 2016-01-24 19:33:54 -0600 Report

Gabby the day the doctor was filling in for my doctor walked in the room and told me I had Cancer, I went from 0 to all in her face in less than 60 seconds. Everyone in that office knew what I said to her. She had not ordered any test, had not fully read my information, nor had she examined me. I told her that after today, I never wanted her to come near me again even if I came in with a limb hanging off my body. She ordered the test, then changed it and didn't tell me. When the technician found that out he had to consult with another doctor to see if the test could be administered. They did it with special precautions. I was so glad my doctor was back when I went to get the results. He said I heard you had an incident. I told him to call it whatever he wants but make sure none of my appointments are on days when she has to cover for him. When she sees me she meekly says hi. I cannot stand her. You don't walk into an exam room and tell a patient he/she has cancer without any test for cancer being previously ordered. I was so mad that I felt like I had an out of body experience.

Type1Lou
Type1Lou 2016-01-24 10:25:29 -0600 Report

You've summed it up pretty well. I've attempted to learn all that I can about how I can control my diabetes. I now feel comfortable questioning my doctor about something that either doesn't seem right or I'm not comfortable with so I can either obtain an explanation or discuss my concerns. I changed PCP because the prior one was a dictator and wasn't listening to me, even after his advice landed me in ICU. Advocating doesn't have to be done in a confrontational manner to be effective. Vis-a-vis insurance claims, I am a more aggressive advocate about obtaining what I feel I'm entitled to, particularly if I've been denied or am being given the run-around. I will state the facts of my claim, if denied, in a written letter which helps me put forth my case in a logical and reasonable manner. When needed, I don't hesitate to escalate my concerns up the administrative ladder and even to State Insurance Departments. I've found those letters, when needed, get attention and results. I resorted to that with Medco some years back about my insulin RX and am recently engaged with Quest about a Vitamin D blood test denial under Medicare. I also successfully appealed a Medicare denial of my insulin RX from last March. It took until August to obtain a "redetermination" of their denial…but, we're dealing with government. For me "advocate" is defined as standing up for oneself and others to obtain what is rightfully due us.

Dr Gary
Dr GaryCA 2016-01-25 10:18:11 -0600 Report

Hey Type1Lou! Great to see you. Getting educated is an important first step, becoming an authority on your own health prepares you to ask questions. Glad you got rid of that dictator! I often hear that patients need to know how to be assertive with insurance companies to assure they receive what they are entitled to. I often wonder if patients are often given an immediate no to many requests as a matter of routine. And as you said, the better prepared you are with the facts, the more logical you can be, the more likely you are to get what you want, while ready to kick the issue upstairs as needed. A good strategy. And you have certainly had success with that approach! And I agree with your definition. Thanks for sharing this.

suecsdy
suecsdy 2016-01-24 09:56:27 -0600 Report

I grew up I an era when drs were considered to be demi gods. You went to the Dr when you were really sick and you did what they said. So for me, being an advocate means educating myself about what is happening with my body and asking questions. Making the most of my time with the Dr because it is limited. I have started making a list of questions and topics I want to discuss and check them off as we go.

Dr Gary
Dr GaryCA 2016-01-25 09:52:52 -0600 Report

Hi suecsdy, I grew up in that same era. Doctors' words were to be followed to the letter and they were never to be questioned. That attitude had a negative impact on my own health and my parents as well. I think that being a good advocate, as you said, begins with getting educated yourself. Then you are in a better position to know when to question a decision by your doctor and what questions to ask. And good point, time is limited, all the better reason to be well prepared. Thanks for checking in.

Beckett
Beckett 2016-01-24 08:53:30 -0600 Report

For myself, education has been key. Understanding diabetes, current recommendations, the history of the disease (and how it's been treated) — these are all factors that have helped me become a better advocate.

I'd like to point out that in many cases age and experience play a big part in how a patient advocates for themselves. I have a handful of young adult nieces and nephews, two with ongoing health issues which are not straight-forward or cut and dry. Despite being clear-spoken, intelligent young women, they seem incapable of any sort of assertiveness when it comes to their doctors. They clam up as soon as a person in a white coat enters the room and rarely ask the pre-set questions we agreed to beforehand or press for clarification on test results, etc.

They maneuver through their careers with mature confidence. But pressing a medical professional for details — or God forbid, disagreeing with one — is next to impossible for them. Of course, I'm sure this isn't true across the board, but I think many younger patients are not assertive enough when it comes time to self-advocate. I wonder how many doctors keep that in mind.

Thanks for the informative article.

Dr Gary
Dr GaryCA 2016-01-25 09:50:19 -0600 Report

Hi Beckett, nice to see you again. I totally agree. Education is power! When you're on top of the information, you are better prepared to ask the best questions and do what you need to do to manage your health care. Very interesting that your young adult nieces and nephews are not so assertive with their doctors. I wonder if they don't have the same sense of urgency about making good health care decisions that someone who is older, and who has dealt with health issues, might have. Thanks for your kind words!

Knitting Bubbie
Knitting Bubbie 2016-01-24 04:52:18 -0600 Report

This is a great topic, and a well written article. I have just switched endos because my previous Doctor did not take my questions and concerns seriously. My Aic readings kept going up, and she insisted that I was not following her directions. I knew I was. When I mentioned some things I had seen online, she said "you can't believe everything you read online." I am experienced at doing research, and evaluating sources, and she knew that. I have read that a definition of insanity is to keep doing the same thing over and over again, and expecting different results.
I finally switched to a new doctor who has me on a new regime of meds. I am feeling much better and am finally seeing some numbers that I like. He also listens to, and answers my questions seriously. My main regret is that I did not switch sooner.

Dr Gary
Dr GaryCA 2016-01-25 09:09:52 -0600 Report

Hey Knitting Bubbie, nice to see you. It's been awhile. Thank you for sharing this story. It is a great example of advocating for yourself. A doctor who won't listen, and who insists that you are the problem and not them, is not a doctor who has your best interest at heart. Glad you switched up to a new doctor with a fresh approach and a listening ear. Congratulations!

cmr55
cmr55 2016-01-23 23:04:55 -0600 Report

Great article. Being informed and educated helps you understand what your disease is all about. If you have a doctor that is not knowledgeable on your condition get a new one. I have a new primary care doctor who I seen on Friday. We talked about what has gone on with me in the last 6 years. I asked questions and she asked questions I feel confident that we have the right fit. The three doctors I see Primary Care, Endo, Neurologist. What is nice is I can email what is going on and they will let me know if I need to make an appt. etc. My neurologists wants me to email him on my progress each month. I feel he really cares. Now in the past I have had doctors who if you did not agree on what ever the treatment is or if you questioned them they would get offended. They seem to feel they are the experts and you are just a lay person. That is why some patients do not ask questions of their doctor. I do not feel you have to be confrontational just be nice and calm and express what you feel you need. Hopefully that doctor will explain why he feels you need to do what ever. Then you can agree or disagree, or get a new doctor. .

Dr Gary
Dr GaryCA 2016-01-24 21:23:44 -0600 Report

Hey cmr55, great to see you! And thank you. Sounds like you have a pretty solid team in place for your healthcare. That's really good. And you have that team because you have been a good advocate for yourself. Asking questions, and insisting that your health care providers are willing to answer them. I think that should be a basic right of patients, but I so often hear about doctors who don't feel they should be questioned. And I also agree that it is possible to express yourself without being confrontational. A calm and respectful approach can get you the same in return. If it doesn't, then this is a doctor who doesn't deserve your business. Thanks for checking in!

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