How to be Your Own Advocate

Why is it that every time I meet a new care provider on my journey they are taken aback by my medical prowess? Just this past Tuesday I was in for an MRI of my lumbar spine and while I was getting situated on the bed of the machine I was asking about the specifics of the images. One of the techs looked at me and asked if I was in the medical field, if I was a nurse or something similar.

I laughed a little and said “Nope, just like to know what is happening with my body.” They both looked surprised and said “No one ever asks us questions like that.”

Why not?

Why don’t more patients ask questions like that? Why aren’t we hopping in the driver’s seat of what is going into and being done to our own bodies?

I think one of the biggest issues stopping a patient from speaking up is the idea that the doctor knows best because they are, after all, the doctor. While I am inclined to agree with this on the basis that our providers have gone through years and years of schooling and training. – One does not simply wake up one day and decide to be a doctor. (That would be terrifying really.)- That’s where the concept of “knowing best” ends for me.

If I have learned anything in this part of my life it is that I am the only one who really, truly, 100% gets what is going on. Unless you are lucky enough to have a team of providers who all have the exact same condition as you, there is only so much they can understand about your case.

The books and training tell a medical provider that X,Y and Z together equal a particular condition. The books tell them that there may be some discomfort caused by the condition and if they have several patients with that condition their understanding of the condition grows. But it’s mostly like math for them.

In math 1+2 will always equal 3. Always. Numbers don’t change. But bodies do. We are all different. Every single person living with PCS (or any other condition) will not have the same symptoms and they won’t feel the same way all the time. Some patients are able to continue on with their daily lives and manage symptoms with medications and life style changes. Others have their world completely turned upside down. They are forced to leave their jobs and make major changes in their daily life. Neither one of these is the “correct” manifestation of the condition, and neither one predicts that the next patient in line will have the exact same experience as either of them.

Another reason I think it is so important to be an advocate for yourself when it comes to your medical care is that its your body. It’s your life. It’s you. At the end of the day, when all the doctors go home and the friends leave and your kids are in bed you are the one who is left with the condition. You are the one who is feeling the side effects of medications, healing from procedures, saving spoons for upcoming events. You.

Could you think of a better reason?

So now that we’ve decided that you are going to be the one driving this bus, we need to know how to do it. How does one advocate for themselves when it comes to receiving medical care?

The first thing to remember is that your doctor is your partner not your boss, and you both bring things to the table. Like I said before; the doctor is the “book expert” as they have the training and the medical experience. And you are the expert of you. WebMD has a fantastic explanation of this:

“The ideal doctor-patient relationship, says Haidet, is like a meeting of two “experts.” The doctor comes to the meeting with medical expertise. “The patient is entering with contextual knowledge [;] what these symptoms mean in the broader context of [their] life, and what kinds of therapies that broader context is going to support,” he says.”

I used to think that if it wasn’t my provider’s idea it wasn’t a good one, or that it didn’t exist. What I have found is that my doctors are so slammed for time and overloaded with paperwork that they often don’t have the resources to go digging for every single option out there. But you do, and you should. Remember, it’s your body and your life that stands to benefit from all of this. So don’t be afraid to ask for something you’d like to try, or a test you’d like to have done.

Personally, I am a huge fan of research. The internet is amazing and there is so much information waiting for you in articles and studies. I find that forums are a gold mine for information as well. While a Mayo Clinic write up on PCS will tell you the basics of the condition and how to treat it, forums are where I find the most “user experience” to be.

Forums are full of people who are living day to day with this condition and we compare notes on symptoms, medications, therapy options and procedure outcomes as well as what life is like for us. I will write down some of the recommendations that seem to be the most effective based on patient reviews and medical articles. Once I decide it’s something I am interested in trying I take it to my providers and ask about the possibility of trying it.

True story: at my last appointment with my Radiologist he told me that though PCS is a common condition among women (and men) patients are not routinely referred to them. The Radiologists don’t have a women’s clinic to investigate gynecological issues and most providers don’t know what to do with Pelvic Congestion. So it’s the patients that do the research and find the Radiologists.

Along these lines of working with your provider is the next biggie: ask questions, and then ask some more. If you aren’t familiar with a term or a treatment option; ask. Ask about how it works, why it works and what the possible complications are. Cross check it against any other current treatments you are using and don’t be afraid to ask for research that backs up the recommendation. Sometimes it can be intimidating to talk to a doctor about things, or to challenge their recommendations. But it’s also not a great feeling to leave the appointment feeling misunderstood or like you don’t understand what’s going on.

Which brings me to my next recommendation for advocating for yourself, and it’s a toughie. Don’t be afraid to say “no.” I know, I know. It’s scary. As a patient we don’t ever want to come across as unwilling or ungrateful for their help. But I have to go back to the fact that you are the expert on you here and if something makes your gut hurt when you think of trying it; say “no.”

You know what I’m talking about. There are things that make you feel hopeful and then there are things that make you feel sick just considering it. When that happens say “no”. The treatment option isn’t going anywhere and down the road as things change if you decide you want to give it a whirl you can. There is no pressure to dive in on anything you aren’t ready to try.

Maybe it isn’t a gut feeling but a past experience has taught you that a particular group of medications don’t play well with your body. Personally, I am Serotonin Sensitive so I know to stay away from anything that behaves as and an inhibitor to the reuptake of Serotonin. For me Antidepressants and other such goodies are out.

Another thing you can do is to be proactive. Keep journals that track your symptoms along with food, activity levels, sleep patterns, stress in your daily life. All of it. This ties back to you being an expert on you. You’ve got a front row seat to how this condition effects your daily life, and so much information can be found when you dig into the finite details. Take this journal and any discoveries with you to your appointments and ask your doctor if they can suggest any other things to pay attention to.

When we look back at all of these suggestions, the main theme is communication with your providers. You and your providers are a team, and you are in control. I can’t stress this enough; this is your body and it’s your life so you owe it to yourself to take an active role in your treatments. In fact, most providers prefer their patients take the initiative to learn about treatment options and if you find your particular provider doesn’t care for your involvement it’s probably best to part ways.

If you have any questions, or would like to suggest more ways to advocate for yourself you can send me an email at TheseNext6Months@gmail.com. You can also find me on Instagram at Secretly.a.Superhero and “like” our Facebook page at http://www.Facebook.com/TheseNextSixMonths

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