Self Advocacy and IBD

Being an active participant in your own health care means being a confident self advocate. Let’s look into self advocacy and IBD. How self advocacy affects our ability to heal. And how we can get better at it.

Click here to read my #1 piece of advice for how to self advocate for yourself with your doctor.

This week we will discuss,

What is self advocacy
Why is self advocacy and IBD important
What to expect when being a self advocate
Don’t be afraid to change doctors
Find alternative help

What is Self Advocacy?

Self advocacy is the practice of speaking up for yourself. Self advocacy and IBD means having the ability to ask important questions. And being confident with your own knowledge, while sticking to your core health values.

It is the ability to make your own independent health decisions.

Self advocacy and IBD means being an active participant in your health care. It means asking questions about proposed drug treatments, or surgeries. It means asking about diet, and alternative practices. It means putting the needs of the patient first.

Self advocacy means being sure that your doctor understands you. And you understand the doctor.

Why Does Self Advocacy Matter?

Doctors want patients to self advocate. It has even been found that lack of self advocacy can have negative outcomes on patient care. This is often related to patients having a limited understanding of the disease, and its treatments.

Speaking up for yourself can be challenging. It is easy to feel intimidated, scared, or stressed out. Especially because you are often speaking to a doctor, someone who is held in very high regard.

But it is so important.

With practice self advocacy gets easier. If you do not advocate for your health issues, you may find yourself overlooked, or misunderstood.

You are the expert on your body. It is your doctor’s job to work with you, not against you.

There are also a few risks if you do not self advocate. You may find that your core values are not prioritized. Your health plan, and important questions get side lined. You may get swept up into a treatment plan that you do not want.

All of this can lead to your receiving health care that you are not happy with.

What to Expect with Self Advocacy and IBD

In my experience with self advocacy and IBD doctors, I have had mixed experiences.

A lot of doctors have a set idea of how you treat IBD.

My experience with health drug plans goes like this. First you start with entry level drugs like mesalazine, and use prednisolone in a flare. Then once that doesn’t work, you move up to immunosuppressant drugs, and then biologics. Then when that all fails, move onto surgery.

If you want to discuss treatment ideas that are different than this pathway. You may find that the doctor knows little, or nothing about the treatment.

This does not necessarily mean that the treatment is bad, only that the doctor does not know about it.

When my doctor was pressuring me to take Remicade, I felt very intimidated. He told me he feared I may have a bad 5 years if I do take the biological drugs. I asked him to provide me with statistics on how likely Remicade is to heal a fistula, and put me in remission. He looked confused. Like no one had ever asked that question before.

I told him I could not make an educated decision without that information.

Don’t Be Afraid to Change Doctors

If you have tried to self advocate for better IBD management, but your doctor is not listening. Or if you find that you and your doctor do not see eye to eye on some key topics.

You may find that your best option is to get a new doctor. You need to be with a doctor that you can trust. Someone who you know respects your core health values.

A great place to start could be with a second opinion. Especially with important health decisions. No one person knows everything. It makes sense to get a second, or even third opinion on an important topic. Especially something important like surgery, or drugs with bad side effect profiles.

Find Alternative Help

Incorporating some alternative medical practitioners into your health care team, will give you a wider range of information.

There are a whole host of therapies and therapists out there that may benefit your condition.

A few examples are,

Naturopaths: use natural remedies to help the body heal itself
Dieticians or nutritionist: find someone with knowledge of IBD
Acupuncturist
The use of supplements
Myotherapy
Physiotherapy
Chiropractor

Mental health specialist

IBD coach

Creating a great medical support team will make you feel more confident, and knowledgeable about the decisions you are making.

Self advocacy involves researching your disease. Organizing appointments, alternative therapies, and making a healing plan for yourself.

I have found that Facebook support groups can be really helpful for learning. There are often recommendations for alternative therapies that have worked well for others. It is a great place to find new things to look in to.

Good self advocacy and IBD means that you can take an active part in your own health care. You can truly become an expert in your own condition. And make informed, confident decisions about your healing.