Be Your Own Advocate
I’ve known my body for 33 years. I know how it feels when I eat something I shouldn’t. I know how I feel when I am starving, and I know what it feels like to feel awesome. So, while doctors are medically trained to diagnose symptoms, I know that I am the only one who truly knows my body and what is going on at all times, which is why it is important to advocate for myself when dealing with my Crohn’s and seeing my physicians.
Being your own advocate as a patient is critical. Here are a few tips to ensure you are getting the proper care and doing what you know is best for your body.
Tips to advocate for yourself with doctors
1. Ask as many questions as necessary
There is no such thing as a dumb question, especially when it comes to your body and care. Ask as many questions as it takes for you to fully understand what is going on and feel comfortable with the diagnosis and treatment plan. I also find it helpful to write down questions before the appointment so that I don’t forget anything, and it is easy to forget when the doctors are throwing a lot of information at you at once.
I have also been told that some patients prefer to have someone with them so that they are sure they don’t miss any information that may come due to feeling overwhelmed. I, personally, do not like bringing anyone to my appointments as I do not want to inconvenience them and I feel that it is quite personal information about which I feel more comfortable only telling my doctor. But, if that technique works for you and allows you to gain as much information as possible, then go for it.
2. Don’t be afraid to question your treatment plan
It’s ok to say no, or ask for more time to think about a treatment plan. If you are truly not comfortable with starting a biologic or would like to do more research about it, let your doctor know. Of course, doing too much research may lead you down a terrifying rabbit hole, but by taking in all of the necessary information presented by the doctor and weighing the risks versus benefits, it is ok to say that you will get back to him/her in a few days after you process your options.
3. Be persistent about a follow-up
Gastroenterologists often see hundreds of patients a day and can lose track of following up with you regarding test results, lab work, or next steps. Be sure to take it upon yourself to get your test results within a reasonable amount of time, and if they tell you “If you don’t hear from us, everything is ok” still follow up as you could have just been missed. It is always safer to give a quick phone call to your provider to be sure all is ok and nothing was overlooked.
4. If something doesn’t feel right, speak up
This has happened to me several times. Either I was misdiagnosed or it was attributed to a side effect when in fact, it was an issue that needed immediate attention. As I mentioned above, we all know our bodies, so when something doesn’t feel right despite the doctors saying “it will resolve on its own” or “it is just a reaction to the medication”, insist on being seen or getting the proper tests done to rule out anything that is serious, or to take action should the issue be easily treatable.
5. Do your due diligence
Similar to what I mentioned above regarding research, do your due diligence so that you know what is going on, potential complications, and other options that you have to improve your symptoms. Of course, do your research with caution and use only credible sources, but having an understanding of what is going on in your body and your options is critical when getting the best care. Also, feel free to connect with other patients who have gone through similar situations (although no two patients are exactly the same!) and just be knowledgable and educated as to what options you have and what will work best for you, your body, and your lifestyle.
These are just a few ways you can be your own advocate when dealing with Crohn’s Disease that I have implemented and have seen be successful in getting the treatment I needed to be in the best condition possible.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?