As a person with chronic illness, I can definitely relate to this. I’m pretty sure that at some point or another I have been told to “just get better”. The one phrase that I remember the most is that cut the deepest was “you just need to take better care of yourself.” Really? It’s not that simple. You can take your medications how your doctor prescribes them and you can still have your symptoms flare up. You can do everything right and still have your body turn against you.
This is also how I feel when people tell me to “just be positive.” There are times that you just need to be angry. You have to deal with those emotions so you can move forward.
Honey, let it out. Be pissed if you’re pissed. Be scared if you are scared. Be real. Pushing every negative emotion to the back burner means that those pots are still simmering.”
So please, don’t get mad at us if we seem frustrated when we hear advice like this. We’re doing the best we can and hearing “Just get better,” doesn’t actually make anything better.
One one of the most important things I’ve learned since being diagnosed with IBD is that you need to be your own advocate. You know yourself best. I’ve learned that you can’t always rely on your doctor to read your chart every time that they deal with you. My GI two different times has tried to put me on some form of mesalamine even though it’s listed as an allergy in my chart.
Now, should my doctor go over my allergy list when he wants to prescribe me a new medication? Yes, I think so. Seems like something pretty simple to do. But he has yet to do that. Or if he does read it he’s ignoring the fact that Lialda is listed as an allergy. So when this happens it’s up to me to remind my doctor that I can’t have mesalamine because it will put me in the hospital. This is one of the reasons why I feel that being your own advocate is so important.
Here are some other ways that you can be your own advocate:
- Educating yourself about your disease.
I feel that everyone should know what the signs and symptoms are of their disease. It’s always a good idea to know what your body is doing and what is normal and not so normal. It’s what allows me to figure out that I’m going into a flare. Or if something new pops up that it could be disease related.
- Asking your doctor questions when you have them.
One good thing to do is to write down what questions you have for your doctor. Find an app(like Keep by Google) to write down notes in so you’ll be prepared for your next doctor’s visit. It sucks to have questions for your doctor and then forget to ask them while you’re there. I’ve done that before. So I always do my best to write them down beforehand.
- Speaking up when you don’t feel well.
You don’t have to speak up every time you don’t feel well but you definitely need to if you’re not getting better or you’re getting worse. You know yourself best. I really wish I had explained to my doctors what was going on better when I was on Lialda. Maybe they would have figured it out sooner? Who knows now but I’m going to do my best to make sure I don’t make that mistake again.
- Read your medication side effects.
I feel that this is super important. I wish I had read the side effects of my medications from the get go when I was diagnosed. I learned the hard way that I should of. It took me being in the hospital for my doctors to realize that I was having a bad reaction to Lialda. The adverse side effects mimic a flare-up of IBD symptoms. So when my doctors and I thought I was flaring I was in reality extremely sick from the Lialda. I actually had my dose doubled while I was on it and quickly went down hill.
Are side effects scary at times? Yes, but you(or someone else) needs to know what they are so you can keep an eye out for them.
- Learn your facilities patient portal.
I love the patient portal. It’s a pretty awesome tool. It’s nice to be able to send a quick message to my GI when something is going on. And my nurse will reply to me on it at times or just give me a call depending on what is going on. I like sending messages over leaving long voicemails. Sometimes it takes a while to explain what is going on. I also like being able to go over my lab work myself and see how things are progressing.
This list isn’t necessarily a direct way to being your own advocate but you can utilize them to be a better advocate for yourself or a loved one. You have to learn about medication side effects and about your disease so if something happens you can talk to your doctor or your pharmacist about it. Being your own advocate isn’t always easy but you have to watch out for yourself. If you’re having trouble speaking up, see if a loved one or a friend can help you out.
Hope everyone has a great week!
How are you your own advocate? Any tips or tricks?