Becoming Your Own Medical Advocate

 

Becoming your own medical advocate is incredibly important. Especially if your healthcare system is working against you.

When I was diagnosed with Interstitial Cystitis/Bladder Pain Syndrome last year, I expected there to be a standard treatment plan set for me, given to me by my urologist. Instead, I was sent on my way with little information about the condition, a new pill to try and a pat on my back telling me to keep doing what I was doing, and a ‘see you in 3 months’.

A lot of my current knowledge about my conditions have come from my own time put towards research, not given to me by a medical team. I purchased many books dedicated to IC and pelvic pain. I read them front to back, and spent hours on google researching the best treatments before deciding on what treatments to try first.

If you’re starting out on your journey to find relief and answers to your bladder/pelvic pain, I would highly recommend these books:

1. The Interstitial Cystitis Solution by Nicole Cozean + Jesse Cozean
2. Heal Pelvic Pain by Amy Stein

We have to accept + understand that we AND our doctors don’t know everything and never will. But a good doctor will listen and accept the information you’ve gathered because they know how much pain and distress you’re in. If your doctor is not taking your pain seriously, you have every right to find a second, even third opinion. By becoming your own medical advocate, you can build the healthcare team that works with you, not against you.

Medical advocacy is a lot more than finding a good doctor.

It is when good doctors turn into great ones because YOU are in control of your health decisions and know how to best utilize their skills and knowledge for your benefit.

 

5 tips to becoming your best medical advocate to get the care you deserve:

1. Create a timeline of some sort that displays the onset of conditions or symptoms.

This gives the doctors a visual outline of your medical history.

See below for an example.

It DOES NOT have to be this fancy. Using Word or a simple drawing would do the trick..

2. Don’t jump into a treatment you know absolutely nothing about. Instead, tell your doctor you would like to think about it first. 

Then ask for:

• The patient information leaflet (if it is a pharmaceutical or device) as well as any documentation that tells you the risks and benefits
• A list of side effects your doctor has seen with other patients
• The benefits your doctor has observed while treating other patients
• A list of other options

I say this because I have heard from many who have done too many Hydrodistention’s on their bladder because their doctor told them it was going to “fix them”. Many patients aren’t told that the results don’t last and that the more times your bladder is distended (stretched), irreversible damage can be done. Always ask about the pro’s and con’s of any treatment.

3. Keep track of your medical records and reports in a medical binder

Nothing is worse then when your specialist doesn’t receive the most recent reports so the referral process becomes twice as long. When you’re in pain, the last thing you want to do is wait any longer than you have to.

Consider the other benefits of a medical binder:

• Saves you time.  If you are ever in a situation where a very thorough history is needed, you have the data already collected without having to think or frantically look through paperwork or online portals.
• Saves you from frustration and constant guessing of trying to figure out what’s working and what’s not. A health planner/journal is going to help you track your symptoms and pain. The same goes for any time you introduce a new medication or a new supplement. 
• Saves you money.  To the point above – you will no longer spend your money on supplements that don’t work or food you shouldn’t eat.
• Helps you discover patterns or periods of high stress and how your behaviour, lifestyle, and/or diet change as a result.
• Keeps you accountable and help you stay on track with any of your health or wellness goals.

I designed and created a Printable Medical Binder/Planner to help keep track of my medical information, appointments and tests. This really helps me stay organized and track my symptoms and progress.

4. Research, and then more research!

Any doctor that tells you to stop using Google, shouldn’t be your doctor. We live in time where the amount of information at your disposal is unbelievably diverse and easily accessible. There is absolutely no reason why YOU can’t use what you learn for YOUR health and wellness.

I really encourage you to start your research well before you see your specialist/doctor. I had to wait 6 MONTHS to see a specialist here in Canada, which gave me ample time to start compiling info and questions for my specialist appointments.

Why is doing research so important?

Let’s say you are experiencing a recurring symptom, such as a chronic UTI pain/sensation present without any sign of infection. Unfortunately, bladder pain can have a variety of root causes.  Finding that root cause is crucial to try to find relief.

So, you take a look at the list of possible causes and start to work through them, trying to determine if one stands out based on your past medical history.  It turns out that one does!  A chronic bladder condition called Interstitial Cystitis, that aligns pretty closely with how you have been feeling.

Now, you not only have a starting point, but you are prepared for your next appointment with a list of specific questions and tests you’d like to have done.

Where to start:

Use Google, join Facebook groups, read peer-reviewed scientific studies, read the blogs of practitioners and others experiencing the same symptoms as you are.  Knowledge is power.

Side note — The human body is incredibly complex.  No study currently will be able to take into account all factors present in your specific case.  What works for you may not work for someone else.  Remember this while searching for answers.

5. Build your healthcare dream-team

Don’t you wish one doctor could do it all? Me too, but that’s just not the case unfortunately. Even a functional doctor (someone who looks at the entire body and all of our systems as a whole), may not be able to offer all of the services we need to achieve the best health and wellness.

A healthcare team can consist of many medical doctors in various specialties such as gynaecology, urology, rheumatology, and pain.  But it can also consist of a variety of other practitioners such as:

• Physical Therapists
• Naturopaths
• Psychologist/Therapist
• Acupuncturists
• Chiropractors
• Pharmacists
• Nutritionists

If you already have a team of doctors, evaluate them one by one.  Are there any that you don’t really like but go to anyways just because they are “the best in the area”, or just feel like you have to?  If so, it’s time to find a new doctor.

If you’re not happy with your team or just starting out, you’ll likely want to start by finding the one doctor who understands your conditions and pain most (the one you will see the most – does NOT have to be your “primary care physician”) and build your team starting there.  This is because like-minded doctors tend to network and know other like-minded doctors and practitioners.  Their referrals can (sometimes) streamline your healthcare dream-team, saving you time and money.

Once you start working with a doctor you like and trust, he or she will be able to give you better guidance as to what other practitioners you may benefit from. 

I hope these tips give you the motivation to start taking control of your health!

Tell me how you advocate for yourself in the comments!