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Need advice for communicating with doctor
Hello, I'm 20 and have ASD and ADHD. Recently I've been having to see my doctor a lot because of some health issues that have come up. She's the doctor for my entire immediate family (mom, dad, little sister) who all love her, but she stresses me out, and I never feel like we're on the same page. For example, 4 years ago we had a call with her to tell her I would like to get an autism diagnosis. I explained to her a few of the reasons I thought I had it, and she told me I did not have it, and that it would be a waste of money. She was obviously very wrong on that one. Whenever I go in with an idea of what I have, I tell her "I think I have xyz because of (insert reasons)". She never listens to that, and always ends up asking my dad to explain my symptoms from his perspective. Luckily he normally just explains the same as me, but sometimes he gets details drastically wrong, and when I try to correct him, she doesn't listen, even if he agrees and corrects himself. That happened today, for example, causing her to think that my issue was way more severe than it is, so she ordered me blood work to be done right away. When I started crying in her office (I've had bad experiences) she thought it was amusing and had to cover her smile while she tried to comfort me by telling me it's going to be horrible, but only because I have a bad attitude. Luckily the blood work went well, but I'm at my wits end with the doctor at this point. I know she cares, but I also know that caring doesn't always translate to being able to help me. Have any of you dealt with anything similar before, and how did you resolve it? I should add, it's not feasible for me to get a different doctor right now.
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@keeg1010
Oh, geeze, I can't believe I forgot to update. The GI was super great at the first appointment. She was a little hard on my parents for not taking me in sooner, but she was nice to me, and she spoke directly to me and looked at all my symptom logs. She went over everything with us, and we found out that I was extremely anemic and suffering from a lot of intestinal inflamation. Anyway, she rushed a colonoscopy as soon as possible. The prep was horrible, but I actually had a really great experience at the hospital. Unfortunately, since then, the GI hasn't really talked to us. She put me on a steroid taper, but I have to wait to find out the biopsy results until the end of the month, which is frustrating. At one point, I was having an allergic reaction, we scheduled a phone appointment, and then she called back to cancel it and say it wasn't important. During that time, I was really struggling with my symptoms and the side effects of the meds. Now that I'm almost 2 weeks in, the meds are finally slowly starting to take effect, but it's so frustrating to have to wait and not even be able to ask any questions I have. Even when I picked up the meds from the pharmacy, she didn't really let me ask about my meds either. I found a way of potentially accessing my medical records through the government to get the results early, but in the meantime, I can't really do much. So far, the GI made one mention of Crohn's, so there's a potential of me having that, but I could also have any number of other issues.
@keeg1010
Also thank you so much for checking in!
@readytogo I feel your pain. Waiting for test results is absolutely one of the hardest things to do. I'm terrible when it comes to patience on tests. I just want to know the answers so we can move forward and address the issue. I'm glad the GI spoke directly to you and listened. What medication did she put you on? How are the side effects now? I know sometimes it can take the body time to adjust to the medication but I believe she should have taken that phone consult to talk with you. When do you go back? Hopefully, you'll get some answers and be able to put a treatment plan in place. Keep me posted! Wishing you all the best!
Kerry
@keeg1010
The medication I'm taking now is prednisone. It's finally been working in the last couple of days, so I've been having less cramps and stuff, but I've also been really emotional and my belly is insanely bloated. I have to wait until the 24th to find out my results, which isn't good because I'll already be almost halfway done my medication taper by then, and I still won't be on any long term meds, so if I need long term meds, I'm going to have to wait longer for them to work. I have plans for basically all of August, so I was hoping to feel better by then.
@readytogo I'm sorry you won't hear sooner. That really stinks! The prednisone makes sense-using a steroid to reduce inflammation but it definitely comes with some side effects. It can cause the belly bloating, as well as feeling super jittery. Hopefully, the steroid will help enough until you get to your next appointment. Please keep me posted when you get results. I'm hoping that they find the real issue and are able to address that with medication. Hang in there!
Kerry
@keeg1010
Thank you! I'll definitely keep you posted if I remember, and if not, you can always just remind me. It's nice to have people to talk to about it on the internet, because my family is getting a little annoyed with all my issues, especially my sister. A little bit of good news is that I managed to apply for a government account that would allow me to see my medical info like lab results, and I should hear back about my account in a few days, so there's always a chance of me seeing the results early. In the meantime, I'm also starting to get out more, which is nice. Yesterday my dad and I went for a short walk to the corner store, then today he and I drove all the way to a bigger place so that I could buy some limited edition Mountain Dew. And then on Tuesday, my sister and I are going to go visit my aunt at her camper for a few days, and she just wants us to do art and relax together. I think that should help keep my mind off of things too.
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