Advocating for Ourselves

I often read posts or replies to posts where someone says that it’s important to advocate for ourselves.  I agree and I say it often myself.  But what does that mean exactly?

I think it might mean different things to different people or different things at different times but I thought I’d ask people to share what it means to them, or what some of the things are that you do in order to advocate for yourself.  Also, what are some things that makes it difficult to advocate for yourself, and how to do overcome those difficulties?

Some of the things I do to advocate for myself:

-          I learn everything I can about any medical conditions I have, so I can make informed decisions about my medical care and also educate my health care providers about my conditions if necessary. 

-          I interview doctors and other health care providers if I can before “hiring" them.  That doesn’t work if I have to go to the ER or something like that, of course, but it works when I am choosing a surgeon, PCP, therapist, etc.  (If they object to being interviewed, I know they are not the right provider for me)

-          I ask lots of questions and if the answers don’t make sense, I ask for clarification.  If something doesn’t sound right to me, I ask where the information comes from.  I take a list of questions to appointments with me so I don’t forget anything and so I can get through everything I need as quickly as possible, because I understand doctors are usually very busy.

-          I am persistent when I need to be.  I try to be polite about it but if something is wrong and a doctor tries to bru**** off, for instance, I make it clear that I’m not satisfied with that and that want them to help me solve the problem.  I will request a specific diagnostic test if I know what I might need or I will just ask the doctor what tests could be helpful if I don’t have any ideas myself.  I will ask the doctor to refer me to another doctor if it seems he doesn’t know how to help me.

I think the times it is most difficult to advocate for myself is when I am really ill or in a lot of pain.  You know, times when I would need to go to the ER instead of seeing my regular doctor, times when it is probably even more important to advocate for myself.  The main way I deal with that is to take someone with me that can advocate for me if I can’t do it so well myself.  Usually that person is my partner and he knows what meds I’m on and what I shouldn’t take and all the important stuff.  I will insist on having him stay with me when I think I might need his help.  I know he will be very assertive if necessary.

So.  How do you advocate for yourself? 

I deeply research ailments or problems so that I am well-informed on it and can really question my doctor about what is going on.

For surgery I find out everything about the procedure as well as about the surgeon who is doing it. And I look up the hospital & it's reputation and, if available, the morbidity rates of patients that had the same procedure done there. I watch live videos of the procedure while it is being done.

Nobody is doing anything to me without my knowing exactly what is being done. I freaked out the surgeon who did my laparoscopic gallbladder surgery... "Are you using the American or the French trochar placements? Optical technique, the Hasson technique or the Veress needle? Will you be doing a cholangiography to insure no duct injury? Etc. Etc." LOL The look on her face!

I Google my doctor.  Sometimes you can find patient reviews online or see their facebook page.  Once I had a dentist that posted a picture with rude comments about an obese woman...clearly he wasn't the dentist for me.

I'm a great advocate for other people; as it is part of my job, BUT I'm a sucky advocate for myself.  I make sure I take notes before I go to my doc appointments, ask questions, and yes, research everything.  I rehearse with my husband before my appointment s, who often reminds me not to laugh (because I have a nervous laugh and then don't seem to be taken seriously).  I've most recently learned to try to flip a switch in my brain and sort of pretend I'm advocating for a client when I'm at my own appointments.  I still feel I fail to get my points across a lot of the time.  Most recently I was hospitalized with an intestinal bacteria and the ER doc ordered Toradol IV.  I told the nurse that Taradol was an N-said and I can't have N-saids.  She consulted with the doc who said, it's not being swallowed and won't bother her one time.  I said, yes it can and it sort of became an argument through the nurse that I lost.  I then freaked when reading ulcers from one dose of an N-said.  I could have argued more, but was in pain and needed treatment.  I specifically went to the ER where I had my surgery so if there were any questions like this, they could consult the surgeon... they didn't.