• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Poor Self-Advocate. Ideas for improving?

I have a laundry list of things for my doctor:
Tell him about the mucus in the stool
Tell him about the return of the joint pain while traveling
Tell him there are two new distinct spots where I'm feeling pain. (At first it was just the lower right side, now it's a bit on the lower left, and also another spot a few inches below my ribs on the left.)

I had him on the phone yesterday to talk about raising my Effexor dose. Did I bring any of this up to him?

Nope.

And now I feel like I can't call him again for a while. I guess because I want to see if anything feels better. I only started Pentasa a week and a half ago and I think travelling may have made by pain worse.

And I don't want to be seen as excessively worried over nothing. (My scopes were basically fine. Nothing of any serious note even though I'm showing symptoms.) I was fairly school avoidant as a child, so I faked sick a lot, and have sort of internalized the notion that I'm a hypochondriac. Even having a been diagnosed in the past means nothing to help me feel like I'm justified feeling ill.

What do I even do with myself?
 
On the phone it's hard. In person I'm okay but on the phone I always feel rushed and skip questions. Maybe you could start the call with " I have a few questions and concerns. Do you have a bit or I could make an appointment soon?" That way you know you are going to get your questions answered and your doc knows you have some.

I am very socially anxious and honestly even getting up the courage to call your doctor with issues is great. (I hate talking on the phone).
 

Cat-a-Tonic

Super Moderator
Are you able to email your doctor or contact him in writing at all? My doctors are all on the "my chart" online app for my hospital, and I can email them directly through that. It's great, I am much better in writing than I am at speaking (I'm introverted and shy and awkward and socially just weird) so it's fantastic to be able to put everything down in writing and get a written response back. And the my chart thing saves all my messages, so if later I can't remember exactly what my doctor said, I can go back and it's all still there in writing. If you have the option, I'd highly recommend writing/emailing your doc.
 
I wiiiiish I could email my doc. He's a bit of a Luddite. I should probably make an appointment to seem him again in a few weeks. But that requires taking time off of work
 

Cat-a-Tonic

Super Moderator
Would your doc respond to a snail-mail letter, do you think? Or is calling pretty much the only way to go? If so, I'd say just call and get it over with - say something like, you forgot to mention some things when you called the other day. They're not going to think you're weird or needy. My GI thinks I'm a pain in the butt (he's literally said so in a written letter to my GP, which my GP then helpfully forwarded a copy of to me) but I don't care - my health comes first. Your health should come first, too.

Here's a trick I used to do back when I first got sick - anytime I had to do anything like call my doctor, go have tests done, go to the pharmacy, etc - I'd grit my teeth and get it over with and then go buy myself a little treat to make myself feel better and to reward myself for getting through whatever thing I had just done. For me, it was always nail polish. It's sparkly and inexpensive and pretty and makes me happy, and even in a flare I can paint my nails and feel a little bit better about myself. Of course, I ended up doing so much medical stuff that I ended up with a rather ridiculous amount of nail polish, so I don't buy it for myself anymore! But it did help me feel better after having to do things that felt unnatural or uncomfortable to me, like disagree with a doctor or ask a lot of questions or just have an uncomfortable test, etc.
 
On the phone it's hard. In person I'm okay but on the phone I always feel rushed and skip questions. Maybe you could start the call with " I have a few questions and concerns. Do you have a bit or I could make an appointment soon?" That way you know you are going to get your questions answered and your doc knows you have some.

I am very socially anxious and honestly even getting up the courage to call your doctor with issues is great. (I hate talking on the phone).
I only like talking on the phone to my mom and one of my college friends. That's it. I'm a horrible admin because I hate answering phones.
 
I have this problem especially when hospitalized or actively sick, mostly because sometimes I worry that the impression I give will influence the doctor's choice in how he chooses to treat me as in what medications they give me or that they will treat me different because my views don't always coincide with current medical practices. I feel more confident when my husband is there as my moral support and perhaps this is because I am a young adult (22 years old, diagnosed since 15) and was used to my parents talking to the doctors and making most of the choices.

Now that I am 31 weeks pregnant I have decided to put on my big girl panties and decide not to give anymore thought as to what the doctors think of me and to make a list of everything I need to say/ask as far as questions and concerns and protect myself and advocate for myself like I would without hesitation (and already have actually) for my unborn child. We hire those doctors, not the other way around.
 
And like... today is a prime example of why I don't want to call my doctor until I'm like 110% sure of what's happening. Because yesterday I had 4 urgent (but mostly formed) BMs... that stopped around 4 pm and I haven't been able to move my bowels for 24 hours.
 
Top