Doctors just don't listen.

[Nickay12]

Hello, I'm new here.. So I hope that I've posted this in the right section. Please forgive if not.

 

Does any one who has been diagnosed with ASD have trouble when talking to doctors about physical illnesses?

Do you find that when you can't explain your symptoms very well, they put it down to a psychiatric Disorder?

 

I get very frustrated when talking to doctors and now I feel very unwell and all the doctor has to say is "you're just anxious. Here, have some anti-depressants".

 

I feel rather stuck.

 

Has anyone ever been in a similar predicament?

 

Thank you.

[JeanneA]

Hi and welcome to the forum. I do understand how you must be feeling it can't be easy trying to explain to your GP how you are feeling especially when all he does is write out a prescription of pills. Have you thought about writing down exactly how you feel and let me read it? also is it worth changing your GP? Is there anyone else you can talk to at all? You really need to be referred for support and advice, have you ever seen a psychiatrist or psychologist? Sorry to keep asking questions but it is important that you receive all the help you can get. Take care.

[LancsLad]

Hi Nickay,

 

Yes all the time. I think there is a big issue here and it is associated with the labeling of conditions. We live in a professional culture where giving something a label is the norm, and no more so in the medical profession. We have to be really honest and ask the question who does this benefit most and the answer is it is not the person with the label.

 

People put us in boxes so they don't have to make too much effort to try and relate to people as individuals rather it is so much easier to say he or she is a 'hoodie' rather than have to pay attention to an individuals distinct attributes.

 

In recent years I moved away from home as a mature student and in that time I recieved a diagnosis for Asperger's. On my return I had to re-register with my GP and explained the change in my medical notes. As a result he put in a request to my local mental health services. It took them 16 months to come back to me and say they have no provision for adults with AS. In this respect they are using a label to simply avoid providing any support. That being the case I have asked for support for my clinical depression, personality disorder (Idon't agree with this diagnosis personally), self harm, potential eating disorder, suicidal tendencies, anxiety, migranes, insomnia, etc.... My GP looked at me and went OK right? I have an initial assesment consultation next month, 2 years on from the first referal. Do I think I will get anywhere with my local adult mental health services, no I don't but if they feel uncomfortable for a bit at least I am asserting my needs and that will make me feel a bit better.

 

If I have any advice it would be to sit down and map out your symptoms in some sort of bubble diagram and try to make any connections if you can, which ones you feel might be ASD related, which ones to any other diagnosis you might have, which ones simply feel like they are individual issues. To then build on this picture of yourself record examples next to each symptom and put a date down and possibly grade them on a one to 10 scale if you can in respect to the negative impacts on your life. What I am trying to get you to do is build a picture of what this is really like in your own life, it does not matter if it is not perfect just make a start.

 

I would then take it to your GP, I would even hand a copy in a few days earlier than the appointment so as to make best use of your slot with them, if they do not look at it in advance more amunition to your belt type of thing. I think such an approach shows you take things serriously. If the GP feels out of their depth then I feel you could suggest that they refer you to someone who can help you build this picture up further in identifying your needs. They may feel they want to move things forwards and so pick priorities out of the diagram to start to work on. It might be the case that they pass on a lot of this responsibility but realise that it should be within their remit to tackle a lot of issues for me this might be insomnia and migranes out of my list, the rest could be passed on to a mental health specialist.

 

I think there are a lot of people out there who are really sloppy and take other people for granted if they allow them to do so. By being organised, firm, objective and importantly prepared to negotiate really puts them on the spot and makes them realise their responsibilities.

 

Hope this helps a little.

[Nickay12]

Thankyou for your replies

 

In response to JeaneeA - I've changed my GP once, but I'm real anxious about meeting new people so I'm kinda reluctant to keep changing my doctor. I have a psychologist, I am aware that I may come across as one of them people who has a mental health disorder, I don't make eye contact I shake alot I rock back and forth in the presents of others and I run off on a tangent when I talk.. I'm really scared of talking to my psycholoogist about problems incase he puts me in hospital or something, I've been in one and I don't want to go back. I live on my own atm and spend 99% of my time alone.. I avoid people.. Which sucks because my problems appear to point to a mental health disorder, but I know that they are a physical disorder.. I don't really have many friends and none that I can talk to about this kind of thing..

 

In response to LancsLad - You are right they label people and appear that they are listening but actually aren't. I just find it hard to tell what I'm feeling and even harder to put it into words.. But I know it's not a mental health problem. I think that I will try to write a chart like you said prior to actually meeting them..

Whoa! 16 months? That is along time for them to get back to you... Do you feel stuck with your situation? I think that's really bad.

Isn't it stupid that when you have active suicidal thoughts which you're going to act on, then they are the first ones there to put you in hospital... But when you come to them for help, they don't care...

Edited May 3, 2012 by Nickay12

[LancsLad]

Nickay I don't feel stuck with my situation. This is how I see it a few years ago I tried to take my own life and spent time in a secure unit. When i was released I knew I could take my life at any point in the future but in the meantime if 'I was to hang around for a bit' I may as well try to improve things. For me a big step was have I got 'needs' or am I 'needy'. I decided for sure I had needs and issues which had to be adressed but i was not going to become 'needy' and reliant on doctors, consultants therapists etc.. as a means of making progress. This does not mean I have rejected them, though at times I have, rather I take responsibility for myself as a priority. For me they have to fit into the work I am trying to do with myself not the other way around!

 

Working on yourself takes time and patience and a lot of self reflection. That is why mapping out your own life areas is a good thing in that it gets the thought process going. From there I have found it is about taking things on one at a time. This might involve doing research, asking friends and family for a second opinion it might mean engaging with professional services. Whatever is involved do it for yourself, with yourself, and at times this might be by yourself, but mosr deffinately at your own pace otherwise progress simply does not stick in place and things unravel. Nickay I very see things as being on my agenda and under my control the day that changes is the day I feel I am back on a slipery path which might lead to some very dark places as such my own suicidal attemps have become my own motivation in this and are a positive elemnt in my life.

[Tally]

Yes, I have the same problem. It doesn't help that I have had mental health problems in the past which are not yet 100% resolved. I was ill for 7 years before anyone acknowledged it was separate from mydepression. I still don't believe I've been correctly diagnosed as I have symptoms this diagnosis does not explain, but at least it's finally been acknowkedged that something other than depression is going on.

 

Having faced a recent bereavement, all my physical symptoms are getting blamed on that now.

 

I do feel it's an excuse not to help, but at least I've made a little progress with it over the past couple of years. I wish I knew the answer for you, but sadly I don't. I just got lucky with a osychiatrist once who realised something separate was going on and made sure my GP knew about it.

[Nickay12]

Thank you for all of your replies, it's greatly appreciated..

[JeanneA]

Hi Nick hope you feel the replies so far have helped you. Lancslad has made some good points. I think that it's great that you are living on your own, it proves that you are capable of doing that so you are capable of other things to. Try and be more positive.

 

Like Tally I also don't know the answer and i do hope you do start to feel happier and more confident in yourself. I bet there are many out there that would envy the fact that you are able to live on your own for starters so think on that. I wish my son would be able to do that in the future but I know that will never be possible as he will always need 24 hour care.

 

You do need to take responsibility for yourself and talk to others as lancslad has stated. Good luck to you Nick and please keep us updated on how you are getting on.

[Nickay12]

Oh I guess I should say I don't live alone by choice My family won't let me stay with them anymore because of the aggression I think.. I used to live in sheltered housing but couldn't stand the noise and all the crazies.. I have an auditory sensory dysfunction where I have to listen to white noise like 23.5 hours per day..

I'm not coping living on my own, I don't clean up, can't remember the last time I washed my clothes.

 

I'm afraid to ask anyone I know for help because they will put me in hospital and I will die before I go back to a place like that again.

 

I don't really know what to do either, but it's nice to be able to talk without being evaluated. Thank you all for listening..

[LancsLad]

Nickay I think we have to get hospitalization periods into some sort of perspective otherwise they can have real ongoing impacts on our lives.

 

From a personal perspective I have had to spend some time in a secure mental health unit due to suicidal tendancies. At the start of this time I did not want to be there I signed myself in simply to avoid a section order so I could get out more easily. These experiences are filled with very strong emotional refferences and are key periods in our lives, I think you need to experience this sort of thing to really understand what it can be like. I think it is so important to get your own experiences rationalised in your head. Sure there will be some bad aspects to such experiences but there are also things which let us move forwards in our own lives, even if for me this was absoloutly hitting rock bottom. I have managed to partially box off that experience in that time and place. I now know I live in another time and place with new elements in my life which I can focus on daily.

 

Nickay I kind of feel there is a real fear coming through your post about having to revist hospital at some time and this is impacting on your thinking today. I can understand where this comes from but am not sure it really helps. There are things you can do today to help however and that is all about building up that self esteem which sounds low at the moment. Make a decision to wash some of your clothes and have a bit of a small clean up tomorrow, it doesn't have to be major just a move in the right direction would be a positive start. Often how we think makes a very big difference as to how we interpret what we do.

 

We can take control of our lives and this requires bravery at times to push ourselves out of our comfort zones. By being in control we are reducing the need for other people to come into our lives and control us, but we have to demonstrate we are making progress and this takes effort on our part. It is so easy to sit back and let issues wash over us and this for me is about giving ground. I get frustrated with myself when I do this because I know it has taken so much effort to move forwards in the first place, but I am human and am prone to letting things slip sometimes. I also know I do not really have days where i get up and I have so much energy i feel I can take on the world, rather it is a case of a steady push each and every day to move in positive directions.

 

When it comes to your home environment I feel you have to take a balanced view, there is no such thing as a perfect environment but some are better suited to our needs than others. I know what sheltered hosuing can be like I have worked with young people who have been in such places. I suspect having space to be yourself is the preffared option though not ideal. I think there are ways you might be able to improve this and there might be a possibility of getting some support for half an hour a day for example to help you keep things organised and check on how you are. To do this however you will need to engage in the system and that brings its own issues. This is where you have to weigh things up which is the lesser of two evils seeing a GP to get support and fill in forms or to deal with things by myself. Only you will know the answers to such questions, that is why I put forwards earlier mapping out your issues as it might make things a bit clearer in coming to your own conclusions.

 

The fact that you are on the forum and talking things through is an indication of the fact that you have a level of control and are trying to do the right thing by and for yourself. we respect this and are here to offer our advice and possible experiences, a lot of the answers though will need to come from yourself. You know that already so keep posting if that helps you work these important issues out for yourself.

 

Best wishes.

[darkshine]

Hello from me

 

I find doctors don't listen full stop - whether discussion physical or mental issues - and what makes it harder is I can't easily talk to them because I say everything wrong (even though it was all right in my head before entering the building)...

 

Best

 

Darkshine

[Nickay12]

I will try my best LancsLad.. I used to have more self esteem. I used to have a job too lol.

 

Hello Darkshine, I too have the problem of forgetting everything I memorized.. I put it down to excessive sensory distress prior to the meeting, like in the waiting room, where they put everyone facing each other and you have nothing to do but stare at your converse for half an hour.

[LancsLad]

Nickay, when it comes to waiting room type scenarios which can be very stressfull I think it is a good idea to develop a visualisation strategy which works for you. This has to be relaxing, emotionally strong and something you can jump into quickly.

 

I will share my own to support the concept but know this can only really work for me.

 

I used to do a fair bit of rock climbing and would train on a local quarry by traversing around its four faces. I did this so many times in training that I know every move off by heart and what it feels like. In palces such as a doctors waiting room I simply menatally go into this sequence in a matter of seconds close my eyes and start working my way around the rock face rensing and relaxing my muscles as I go. There are points in the quarry where I have to jump down walk along a few metres and then get back on the face. These breaks are really usefull for looking up to see if I have been called who has sat down etc... i then get on with climbing. If i finish a complete circuit i simply start again.

 

This works really well for me but requires some practice to be able to get involved, I have at times elbowed someone on a bus and had to appologise "sorry mate I was going for a long stretch hand hold there" to a blank face. If there is not something obvious in your life make something up and include elements of white noise whatever you need to support your well being.

 

Just an idea, hope it helps.

[darkshine]

The one room I hate more than any other in the world is a waiting room especially at the doctors or the hospital!!

 

The thought literally makes me shudder

 

My strategy is to disassociate - which fails and I usually sit there thinking some of the following things:

 

"got to get out got to get out got to get out"

"want to go home want to go home want to go home"

"urgh there's ill people near me hope they keep their germs to themselves"

"typical if I catch a disease"

"I'll wait 20 minutes and then I'm leaving and I don't care any more about this appointment"

 

And the whole time I try to take up less space by crunching myself into a corner - and my leg starts tapping so I can't stop it without crossing my ankles or I have to lean hard on it or people stare, which just makes me think the previous statements even more.

 

It is no surprise that by the time I get in to see someone I can't remember a thing because my mind can't switch from escape mode to serious mode just because my name was called.

 

Horrible places - I really hate them - and they make me feel insane

[A-S warrior]

doctors are a bit stupid sometimes, i rember once i was feeling a bit tight in the mid section, had a bit of trouble (if you know what i mean) and i was refrerd to a physatrist. wtf? lol i was expecting some ex lax or something.

[Tally]

I also got referred to a counsellor when I had bad gut problems to help me come to terms with the symptoms. It was almost a year after that I was eventually prescribed drugs to actually manage the symptoms! The latter method was the more helpful one, both physically AND psychologically.

[darkshine]

That is so weird - I wouldn't know what to say if that happened to me - it seems they get it all wrong doesn't it?

 

If its something physical they send people to a shrink and if its something psychological or emotional they treat them biologically using drugs - that is so effed up!!!

Edited May 8, 2012 by darkshine