difficulty managing physical health, seeing drs etc.

Post Reply New Topic

I seem to have lost track of what it feels like to be healthy and can't seem to recognise what's normal and what's a symptom I should talk to the doctor about and how to communicate the problem etc. When I've had health probs in the past it's like I had to work out what the problem was in order to be able to tell the doctor, otherwise I could only give a vague description of how I felt. Now I have the same thing. Even though I've been complaining of headaches, I think I just figured out that it's most likely a toothache or dental problem and that I need to see the dentist not the doctor. But it's taken sooooooo long for me to work this out (like many years). When I have a symptom, I seem to just endure it without knowing that there's something that can be done. Just wondering if anyone else has this difficulty and what has helped them. I feel like I need some kind of guide to managing health probs when you are autistic - does anyone know of something like this?

I feel the same., My thoughts are not communicated the way I want. Dr's are not allowed to communicate themselves over email or by letter, unless of course there is some kind of rule i do not know of. So what I decided to do was compose a letter. I suggest doing the same and making sure that they understand Autism.

As an example of how to open up the letter this is what i wrote. feel free to use it, adapt it or even other members could expand on it to make the message clear..

_________________
<Insert meaningful signature here>

I can really relate to this. My health issues seem to come in clusters,
and it's really difficult to sort out what is the real problem and which other
symptoms are caused by my nervous system being in overdrive all the time.
Right now I'm having back pain that comes and goes, but also often a queasy or upset
stomach and other symptoms that seem unlikely to be related to the back pain.
I'm always worried that if I bring up all the symptoms my doctor will never
focus on the real problem and come to a good diagnosis. Also my health insurance sucks
and paying for dozens of different tests myself is just not feasible.
The letter or email is an interesting approach, but not sure whether my doctor would
think it too bizarre (he seems pretty conventional).

You seem to have put the situation into words well, I find myself in the same or a similar situation and I do not like to go to doctors because as you say I dont know what is a symptom or not and often just feel off in general in one way or another.

How many of us tell their doctors they have autism or aspergers?

I have not, and am wondering if that would help or make things worse like say someone has to come with you to doctor appointments but even that might be good anyways.

I have the same problem. Apparently I was having extreme lethargy/chronic fatigue and I didn't really catch it because I didn't know other people felt differently. I have chronic headaches and migraines and I can recognize them, but it's hard for me to tell when I don't have one because I have them so often. It's almost like I don't know what it feels like to not have a headache. I also usually have several muscle spasms at once, but I usually can't tell...I just don't see how it feels different for other people. I suppose I feel tense so often that I don't know what the opposite feels like. I've seen a psychologist to try to work on self/body awareness, but I don't know how much help it's been.

thanks for the advice and reflections.

Similar to the email idea, I recalled that writing notes for appointments has helped in the past and now doing that again. It's still really hard to know what I should say etc but better to figure that out before hand.

also, it hadn't occurred to me that not telling the doctor about ASD was an option but of course it is. Although, I think telling is probably helpful.

yeah if you say everything then you sound like a hypochondriac or end up investigating useless stuff but it's hard to know what it is that they need to know. I had this prob last time where I was reporting everthing except the thing that would lead to the diagnosis.