Wednesday, 19 February 2014

Trouble at the hospital

Today I went to the hospital to attend a monthly meeting, where people with lung problems (like asthma) can get information on all kinds of topics. I used this opportunity to get information on which lung doctor can best advice me, in combination with my autism. I'm not happy with my current lung doctor.

I found a lung nurse (or however I should translate that) who knew exactly who I would need and she told me exactly where to go and what to tell them.

Confident, because I had very clear instructions and even made notes, I went to the lung section of the hospital and told them that I wanted to change lung doctors and which one I wanted. This woman said: "Woah, hold on there! You can't just change like that!" I told her that, in fact, I CAN do that. She responded by saying I couldn't. I said that even this lung nurse agreed. She said "Really??" and immediately called the nurse, who confirmed what I said.

This got me frustrated. Why are they making such a fuss about me wanting to change doctors and why are they treating me like a very annoying, non-trustworthy person, when I'm asking for something that I'm entitled to?

After this, the lady said my story checked out, but that she still needed a reason for my desire to transfer doctors. I told her I didn't want to give a reason and just wanted to transfer. She said I couldn't just transfer like that. That it's common practice to have a closing talk with the current doctor and to give a reason. I told her that might be so, but I didn't want to and that it's my right to choose so.

At this moment she started saying that I HAVE to provide a reason, as it's their protocol. I got really frustrated at this point and told her that the law dictates that I can just transfer doctors, if I'm not satisfied with my current one, without providing a reason. She said that might be so, but that the protocol says I had to.
My mind was blown. Did this woman just suggest you can make someone do anything, even if it's against the law, as long as it's company protocol?? Ridiculous!

I stood my ground, so the woman said she would go off to check the protocol on this. While she was gone, her colleague proceded with telling me that it's simply protocol and I should just give the reason.
I felt absolutely pressured into doing something I didn't want to do, even when the law is on my side. I also felt treated like a little stubborn child, instead of like an adult who knows her rights. Being group-pressured into having a talk with my lung doctor about everything she did wrong in my eyes, felt terrible.
I started shaking and crying and I knew that if I didn't stop the conversation right there, that I would start yelling at someone. Just wanting another doctor shouldn't be that hard!
I turned my chair around, so that I wouldn't be facing that woman, just to decrease information input. I said "I won't speak to you until my mother is here." Then I called my mum.

I know how childish this might seem if you don't know much about autism, but with autism emotion regulation is sometimes very hard. Recognising the signals on time and being able to remain calm and shut myself off, while sorting the situation in a calm way, is actually big progress for me.
Autism is an information processing disorder and emotions, both mine and yours, are information too. Too many emotions can result in lack of a clear view of the situation. So now you see how actually being able to think of shutting off more input of emotions and calling my mother for help, is a very big step.

My mother was at home (I knew this) and when I called, she rushed over to help. When my mother arrived (we live nearby the hospital, so this didn't take too long) the woman who went to check the protocol also returned. She suddenly told my mum that I could make an appointment with the new doctor without giving a reason, or holding a closing meeting, but that they made a big exception especially for me.
I was glad that I was still not saying anything, unless it was a straight response to my mum, because I wanted to scream: Big exception?! IT'S. THE. LAW!
After we made the appointment and were getting ready to leave, the woman said: "But you know, this isn't just like going to the butcher. In the sense of that you can just go to a different butcher if the current one does a bad job."
Erm, wait what? If my doctor does a bad job, then I can very much so go to a different doctor! It works EXACTLY like that!

My mother and I hightailed out of the hospital, without saying another word to the rude women.
Outside of the hospital, my mother and I just couldn't get over the sheer rudeness of it all and how those women violated my rights. My mother said: "Hold on... Hey, do you maybe want to file a complaint?" I hadn't thought of that, in all the fuss, but yes! Yes, I absolutely wanted to do that!
So we went back in the hospital and went to the complaint department. The women there were shocked as to how we were treated and told us that we were right. That I can just change doctor, without giving a reason. They gave us lots of support and encouraging words, which was lovely of them.
My mother and I filled in the complaint file, thanked the ladies, and went home.

Seriously people, don't forget to stand your ground when you're in your right, just because you're being pressured. Don't ever let anyone pressure you into something that you're not comfortable with and that you don't have to do.

I'm very worried that if they're this firm with me, then what would a less strong person do in this situation? Would another person be set in a situation they don't want to be in, because they're pressured into it? That's why I filed the complaint. This is just an awful way to treat your patients.

Seriously, I can't stress this enough. Stand up for your rights. Your rights are there for a reason.

Sunday, 2 February 2014

The other side of it

While things seem to look up a bit in terms of getting help and being an experience expert on autism and things like that, that doesn't mean that I'm suddenly all better. It would be amazing if the world worked like that, but sadly it doesn't.

Right now I'm feeling that all too much. While I'm really happy with everything that's going on, I'm also doing new stuff. Remember: For most people with autism, and for me too, new = scary. Sometimes people try to protect me from 'new' because of that, but that's not what I want. With autism it doesn't matter whether you like this new thing or not. If new is scary to you, then it's also scary when it's something you want.
Also, there's the uncertainty of it all. Will I be able to get the funding for the guidance that I need? And if I will, will I be allowed to keep it, seeing the way the economy crisis is developing? What will my future look like?

So yes, a lot of good things are happening. At the same time I have moments where I start to panic. These moments keep me out of my sleep. Sleep deprivation makes my day harder, as I already have so little energy. Still trying to get through the days with less energy, makes for more days where I cross my limits and feel awful. Pain in my muscles and joints, dizziness, oversensitivity... Oh yea! Oversensitivity. With autism. Greeeeaaattt combination. Not really. So all of this makes me even more sensitive and more likely to panic, causing for the whole circle to start again. Not even mentioning my asthma yet, which is also a big fan of my panic attack parties. So my asthma attends the panic party uninvited. The party crasher makes the, already terrible party, even worse and then it's a big disaster.

Of course the answer is simple: Take some extra time to rest to break the circle! Yes, that is the answer indeed. But this also means that my, already broken, biorhythm, is now completely shattered, as my body is confused as to which time is the appropriate time to rest. My body now seems to think that any time is a good time to rest, making me asleep or awake at the strangest times. This is very hard when I have an appointment.

Don't worry, I'll be fine. I've been through this more often. Like when I was trying to get government profit. I've always been able to get through it, so I'll be able to do that again. I'm just writing this down to show the other side of it all. I'm trying to show that just because things can go really well sometimes for someone, that a disability doesn't just conveniently go away for a little while, so that you can enjoy it to your fullest. That's just the way it is.

To end on a lighter note: I've been asked for a few more presentations, so I'm looking forward to that!