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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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@readytogo
I am so sorry to hear that you are having such difficulties with your doctor. I understand that your family has been seeing this doctor but that doesn't mean that you need to continue if you are feeling uncomfortable, unheard, or belittled. The doctor's job is to listen to their patient and advise them as to how to proceed. You should never feel that you're not being heard. Have you looked into switching doctors? Do you have transportation if you were to change doctors? Is this your primary care doctor? If so, have you thought of seeing a doctor who specializes in autism and ADHD? I have a so, Keegan, who has autism, cerebral palsy, and epilepsy. I have had to personally fire several doctors because of the same reasons. They were not listening to me, they thought I was being overprotective, they couldn't see what I saw with my son. This was years ago when he still had a pediatrician. He is now 28 and has wonderful doctors. You have every right to be the best advocate for yourself and to feel comfortable with your physician. I wish you all the luck! Feel free to reach out anytime.
Kerry
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1 Reaction@keeg1010
Thank you for the advice! Unfortunately I wouldn't have transportation if I switched doctors. I only have one potential option that might work. I could look into finding someone who specializes, and if my parents say they won't bring me (they will say it, I know them) I can ask my aunt for help. She lives in another town about an hour away, but she might be willing to send one of my cousins to take me, though it would be hard to go to an appointment without my dad. Or maybe I should try to get my mom to go next time and see what happens... Anyway, thank you for the reply. It's nice to feel heard!
@readytogo
You are not alone and will ALWAYS be heard here. I know how difficult it is to deal with doctors who don't listen. It's so frustrating and completely arrogant. Maybe try taking your mom next time and see how that goes? I'm glad you have family, even if they are an hour away. If things don't go well at your next appointment and you feel like you're not being heard, you have every right to voice your opinion. If things don't change, see what you can work out as far as transportation. I'm not sure where you live or what type of insurance you have but I know some insurance companies will include rides for medical appointments. It just varies from plan to plan, state to state. I am so happy you found this group. I don't know if that was your first post but you are always welcome here. Everyone is wonderful and supportive. You will always be able to reach out and know there are people who care. Take care and keep me posted. I would love to know how things are going.
Kerry
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1 Reaction@keeg1010
Once again, thank you! I live in Canada, so insurance is a bit different here. I'm covered under both of my parents plans, but I don't believe that medical transportation is covered in that way, and another difficulty I just thought of is that I don't actually know how to use the insurance, so I'll have to learn that. Also, this was my first ever post, on any internet group (except for games), not just this one, so your kindness has meant a lot to me. I will definitely try to remember to update next time I have to see the doctor, which should be soon, because I'm waiting for my blood test results, and she said she'd call right away.
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1 Reaction@readytogo
Yes, I understand Canada's insurance is definitely different from here (Arizona). I am glad to hear you are covered under both of your parents' plans. Insurance can be tricky but I'm sure if you ask, your parents will likely explain how it works I'm really glad you found this board. It's a great support system. Definitely update me once you get your blood work back. You got this!
Kerry
@keeg1010
So I finally have an update. The doctor was supposed to call on Thursday or Friday with the results. She called on Thursday morning, and I'm the one who picked up the phone. It turned out all she wanted was to know if I had even been to do the blood work, because she didn't think I'd actually do it. Anyway, after that, I didn't hear from her Thursday or Friday, so I had to wait all weekend until today, when she finally called, but my dad ended up being the one to pick it up. I wasn't there for the conversation at all. She was perfectly happy discussing my health without me there at all, even though I'm legally an adult. She ended up having him schedule an appointment with a specialist who we'll be seeing tomorrow to try to figure things out, but my dad told me that she said to "make her drink as much fluid as possible. I know she doesn't like to drink plain water, but you can't let her just get dehydrated". It made me so mad, because I drink plenty of fluids (flavored water, water with vitamin or electrolyte packets, etc.) and literally brought my favourite reusable bottle to my appointment with her.
@readytogo
Hi there! Thanks for keeping me in the loop. Since you are 20, why does she feel the need to discuss everything with your parents without you being there? Do they have guardianship over you? I know you said legally, you are an adult but here in Arizona, if an adult turns 18 and has special needs, you have to apply for guardianship, even if you are the parent. Not sure about Canada.
Did your Dad talk to you about the conversation with your doctor? What did she say? What kind of specialist is she referring you to and why?
I can understand your frustration about the water thing but she may have mentioned that because she saw something in your blood work. I know my husband, Quinn, drinks water all day. Sometimes up to 2-3 gallons a day during the summer. Our doctor actually told him he was drinking too much water because his electrolytes were low. Not the same thing as you but there might be something she wants to monitor on your blood work. Keep me posted! I definitely want the answers as to why that comment was made.
Kerry
My parents don't have guardianship over me. We've never thought about anything like that, and I'm only living with them to make it cheaper for me to finish school. I don't know why the doctor was so comfortable discussing things with just my dad, but it bothers me a lot. He did do his best to tell me all she told him, it's just that his memory is pretty bad, though it sounds like he hit all the important stuff. As the for the kind of specialist I'm seeing tomorrow, it's a gastroenterologist, and all the doctor said was wrong with the blood work was low blood count (didn't say whether red or white) and inflamation. Hopefully the gastroenterologist will talk to me instead of my parents tomorrow, especially because both parents are going this time.
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1 Reaction@readytogo Hi from Canada. I’m 53, learned a few years ago that I was autistic and ADHD. I’m seeing a lot of medical professionals and although I am in a different position than you, I understand and feel you so much.
Knowing how it can be difficult to have a family doctor, and depending on where you live, have you ever considered to look for your own family doctor?
And how was the appointment with the gastroenterologist? Was it easier to speak with them?
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@readytogo Hi again. I just wanted to check in and see if you got the results from your blood work and how the gastroenterologist appointment went?
Kerry