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What does it mean, be your own advocate?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:29 AM in Matters of the Heart
Many times I hear this phrase, "Be your own advocate" especially when it comes to health issues. What does it really mean?

I don't have any medical background or knowledge of what my body is going through, nor do I really know how / what the protocol or procedures to fix the problem.

I don't know about asking a doctor directly if I should have a certain test. That usually throws them off i think. I rely on them to tell me exactly what to do and I follow. At times, I feel like a test rat. I had doctors in the past asking me to try a certain meds for my spine when my kidneys clearly cannot handle it.

So what does it mean to be your own advocate? Are you all doing it?



  • dilaurodilauro ConnecticutPosts: 9,846
    takes a Passive role or Active role in their own health care.

    Basically, there are two types of patients, the passive ones who accept anything that a medical professional tells them and views that as the final word.

    Patients who become their own advocate, do not settle for a reason from a doctor because they just say so. These patients are the ones that do their own research so that when they are in communication with their doctors, they can speak with a better knowledge base.

    Another example of a passive patient, is one that just takes their pills, perhaps not realizing all the drug interactions. They may not even be compliant with their exercise or restrictions. They dont care to know, they depend on the doctor to do all the work.

    A patient who is their own advocate will question the need and objectives of a medication and understand how and why it should be taken and with what and what not.
    They also do everything in their power to adhere to all medical restrictions. These are the patients, who will normally not do anything that can cause them additional problems.

    The ABCs: How to Talk to Your Doctor

    Ask questions
    Be prepared
    Communication Concerns and Desires
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Basically what this means is to be a strong voice for yourself and your concerns when you can't seem to get the information/help that you need from others(as in your immediate health care professionals). For example, I live in Edmonton, Alberta, Canada. Once I was diagnosed as needing surgery for a herniated disc, I felt relieved...only to find that the waiting times in alberta for this procedure could be up to 4 years. I advocated for myself by researching other options. I found a medical tourism web site, and after a lot of work, questions, and a bit of money, the surgery I needed was done. I also had to advocate very hard for myself to receive my short term disability benefits. It took 3 months of me getting all medical reports from any doctor appointment I had in the last year, MRI and CT scan reports, etc. I had to round up all this information myself, do all my faxes(and there were a LOT) just to get what I deserved. In short I discovered nothing comes easy. Self advocacy is doing what nobody else will or even cares to do, which is get you help for yourself. Sometimes the only ones who can help us are ourselves. That to me is "being your own advocate".
    Hope that helps.
  • dilaurodilauro ConnecticutPosts: 9,846
    and put them into reality regarding your own situation.

    That is the way to get things done! Bravo!
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I'd like to add that being your own advocate might mean accepting help when you need it. If you feel pressured to do whatever the doc says, be an advocate for yourself by bringing a trusted person with you. I know that sounds like someone else is advocating for you and it is, but first you have to acknowledge that finding a helper is being an advocate for yourself. That is still taking an active role in your healthcare.

    An important point I find helps in advocating for my care is to write down EVERYTHING-list of questions for doc, summarize at the end of the appointment what the doc says and write it down next to your questions. That helps me later remember and look up what I don't know.

    BEFORE ANY INITIAL SURGERIES, GET A SECOND OPINION FROM OUTSIDE THE PRACTICE OF YOUR SURGEON. And along with that, if you ever just have a feeling things aren't right, get a second opinion. It is YOUR body.
  • Hi Adam.Being my own advocate-simply put means taking an active role in my health care.

    Both Ron & Craig described it,and it's obvious both are advocates.

    I try my best to be,but you mentioned not knowing what tests to ask for and such.This is where I agree that it can sometimes be difficult..if we don't know what to ask for.That's another reason S~H can be such a helpful tool in our research.We're not permitted here to give TOO much medical knowledge,but we can give enough and get enough to be a HUGE help in getting us on the right path in knowing better how & what to talk to our Drs about on our next visits.

    There is an ART to talking to our Drs (I think) and knowing how to approach him and ask for the help that we need..but balancing that with what the Dr thinks is best-and knowing when to question him.I may not be wording this exactly right and maybe I'm the only one who even knows what I'm trying to say.Research though,because knowledge is our true power.Your kidneys could clearly not handle the meds that your Dr wanted you to try..you obviously knew this and told him--I'm guessing? Without that knowledge you may have been harmed-not helped.Apply that rule to every other aspect of your care-that is advocating.

    Consider yourself fortunate though-think of the people without computers,or the knowledge to even take an active role in their health care-that's just sad to me.
  • I agree too with what ernurse says about taking someone along with you-if that helps.As I mentioned ,I think there is an art in advocating-well,we are not all good at all things and on all days,and where we might not be the strongest,a friend or partener might be more helpful.

    Whatever works for you.
  • Each time I visited the doc, I asked a lot of questions. Somehow, this current OS is not really responding to my questions. Perhaps he really doesn't know many of my questions, as to how a "simple surgery" (he used that phrase) turned its course and caused internal bleeding, infection, mild sepsis and osetomylitis? The famous answer is, 'I don't know' I already had an I & D, obviously it didn't fix the problem. Today I found out that the infection could be seen on Jan 18th MRI. Has the infection gone to the bone then? Answer 'I don't know'. Of course that famous answer was given to all my questions like 'what caused the internal bleeding?' 'Will the next I & D fix the problem?' They honestly don't know what is best for me. The on-call OS now claimed that it is my diabetes. My diabetes had been well controlled till all these things took place; and now I need injectible insulin.

    I feel lost at this point. I used to be a calm person but getting sicker and no answers is draining me out.

    I emailed my original OS to take back the case. Only to find out he is away on vacation / conference till the end of the month.

    So I am kind of stuck here for a while till....???? Do I just wait? What should I do? I have all my CDs, reports from my very 1st fusion surgery till present, blood works, etc. I am trying to learn what can be done to my problems. I know that if the infection doesn't clear, I will have really unforseen problems in my future; if sepsis affects the organs, I am looking at death.

    Please pardon for my venting.
  • Hi Adam,

    Could you get your OS to refer you to another OS that you feel more comfortable with and can give you answers. At this point you need the best of the best in specialists to help you fight this. You are faced with very scary possible outcomes and you should feel comforted by your OS and be able to get some answers. Is there another hospital or clinic you can go to that is more specialized in infectious diseases?

    I'm so sorry you are going through all of this.
  • Hi Adam,

    If you are not getting the help from your current OS and they are not answering your questions to your satisfaction and the OS you would to take your case over does not come back until the end of April, I would get another opinion from another OS.
    Hope this helps. Praying for you. Keep the faith Adam.

  • I agree with kate, if your not getting answers and have lost trust in your current OS, you need a fresh opinion.
    I noticed you said you emailed your original OS, can you try a more direct approach? a coleague, a PA in his office, or I would suggest even the er if needed to get you into another OS's care. With an infection you need a fairly immediate answer as to what should be done and how to approach getting you better.

    If your OS just says he does not know, I can understand your lack of trust in him. Though you do need to keep in mind that infections, death and everything that comes in between are all risks of any surgery, no matter how minor it is said to be. This is the time you do indeed to be your own best advocate. Ask for specifics
    What kind of infection is it? How do we stop it or hold it at bay? What dangers does the treatement present? Try, this specific question, "If you do not know that answers how long will it take you to get me that answers or in to see a doctor that does know that answers?".

    I hope some of this helps.
  • Thanks Ming, Kate, and Wrambler for your support and advise. I am actually looking at different facilities right now.

    Even though the OS may not be nice on the face, he is still getting things done, like ordering a CT to compare with the previous CT and MRI. I think he just doesn't like people to 'order' him around.

    Today I had an appt with the ID doc, I brought my laptop with me, and he pointed out somethings. He pointed out the edema at the edge of the fused bone, a fusion i had 2 years ago. He pointed the edema at one of the screw holes (the instruments are removed) and also the fluid and air bubbles. He is asking the OS to do an aspiration for the fluid to be cultured, and then and I & D to clear it. He mentioned that it is not uncommon to have multiple I & Ds throughout this course for the infection to totally go away. But since my osteomylitis is at a very early stage (He mentioned that it will take many months for the bone to collasp), I still have time; especially I only have low grade fever. Today, he stopped all antibiotics, and see if my fever will spikes.

    I am happy in a sense that there is still time, because my previous one was done in an emergency. If there is time, I will get my original OS back. He is back at the end of the month, and I have already fixed an appt with him. Also, it is caught early, and not a few months down the road.

    I am not happy because I really don't want another surgery. But if I don't have a choice, I just don't. I just have to suck it up and face it, pray about it and think of getting well.

    For once, I am satisfied about the waiting game. lol.
  • When I did the I & D in Feb, it was staph aureus, grain positive, and MSSA. I had been treated with antibiotics for 6 weeks, just starting the 7th week, and he stopped it today. The ID doc says he felt that the 'old' infection was treated but this new one is something he has to re-test, because if the new one is not resolved, what I am taking now is not going to work anyways; but he cannot give me another antibiotic until the culture is done. Being on antibiotic just lowers my immune system, and make me weak and more suspectible to germs. Good thing the weather is getting warmer here. Also, the numerous times I have to visit the bathroom is no fun at all.
  • Forgive me for asking this but I see you mention it several times. What is I&D? How long before you get the results of the culture?
  • Irrigration and debridment (I think) meaning to really clean it out by flushing and scraping all the areas where infection touched.

    They must to the aspiration first before culture can be done. That was the plan after the doctors discuss the CT that I did today. So I am looking at next week???
  • OK, I guess I am advocating. I am trying to be on top of things, but I get really frustrated when the problem is on top of me! lol
  • what it means. I did thought that's what it means, but thought there is more to it. I have been really on top of things, except that this current on-call OS is brushing of my questions. However, he still gets things done. I think he just didn't like 'suggestions' from other doctors. I know of some doctors who will engage and touch a patients but said there is nothing to do, yet some doctors who don't talk much, but work wonders with their hands.
  • Whenever I have a condition, I ask the doctor who is treating that condition, what are the meds that i must absolutely avoid. I go to only one pharmacy, so each time they fill in my meds, they will inform me of drug interraction, and calls my doctor who prescribe the meds about it.

    Yes, we are fortunate to be able to gather knowledge through the internet. Sometimes, too much knowledge scares the heck out of me too.
  • Great idea to bring someone with you to ask questions on your behalf. My wife usually come along, and she remembers what the doctor has said better than I do.
  • Emailing to my original doctor is actually more direct than going through another person. i got an answer from him, that he is on vacation right now and later will be conferencing till the end of the month. i have the first meeting with hiim when he comes back.

    Thanks for your suggestions. I know once I don't feel comfortable with a doctor, I need to 'get out' but right now before going to a different doc, he is still ordering tests to be done, and is working on it. So, I am not totally dismissing him yet.
  • I'm sorry you've had a rough go of it. I'm sure they're going to keep a close watch on you Adam after all you've been through. Are you having less pain now? I&D Incision and drainage. But it could be irrigation and debridement too. I wish you all the best and hope your temp stays down. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • The ID doc is keeping the OS doc on his toes :D and I am getting the tests done to see what is the next step. I am seeing the OS tomorrow.

    My back pain is around 3 or 4 actually, but I feel a lot of pressure instead. I have stopped pain meds completely and not about to start again for this. So far so good, fever hasn't spiked, so I am keeping my fingers cross that it is not an emergency.

    I don't mind them draining it out because of the pressure. If they drain it, it can be tested, for sure, what it is. We'll see what's the plan.
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