Friday, June 14, 2013

Proving that you are chronically ill

Okay something totally different today. I don't think I have ever written a post about being sick here before. But today I want to, no have to share something. First of all I have chronic fatigue syndrome, amongst others. I have been diagnosed with it a couple of years ago. (no I will not start the CFS/ME discussion here). And because my energy level is so low I get help with the household things, each Friday for 3 hours for about a year now. Now it was time for a re-evaluation if I should continue to receive help. And that is what this rant is all about.

Last Monday someone came to my house for a 1.5 hours long talk, about if things got better, what I would expect for the future etc. My BF and I both had the feeling it went well, but on Tuesday we heard they want to visit some kind of doctor, to see where the fatigue comes from and to evaluate if it can get any better. (and by any better, they mean a LOT better) They said it would be a talk of about 15 minutes.

Say what?! They seriously want to base their decision if I need help in the future on a talk of 15 minutes? With a doctor that knows nothing about me? I have to prove that I am sick, basically get re-diagnosed, because they want to know where it comes from in 15 minutes?! Really?! This makes me so mad!

It took me so many years to get this diagnose. And to accept that I have to learn to live with it. And I gave them all information, but they say: you have to come to one of our doctors instead and he will see in 15 minutes where it comes from and what we can do to make it better. Yeah right!

So you would think, why just make a fuss and just go there. But the problem is, with me, you can't see that I am ill. I don't have a broken leg. How will he ever be able to tell in 15 minutes? That is impossible! And it is not just so simple to just go there. Such trips have to be carefully planned, have me all stressed out and cost me a few days to recover from it. It is not simple at all.

So basically I have the following problems with it:
1) these doctors are usually pricks who only want to do one thing, save money.
2) I don't think that something that took many years to find out, can be done in 15 minutes
3) They want to see if things can get better. Yes, I believe that there might be ways that can get me somewhat better. But somewhat doesn't mean I won't need any help at all. They told be I should accept that I am chronically ill, and now they want to make me better. Great way to screw with my brains!
4) I already have a diagnose. (multiple actually) I sent them all the documents I have. Why do I need to prove over and over and over that I am sick? I really wish I wasn't sick too you know! It is not something that is such a great thing in my life. And it is not that I am not working to get things somewhat better! I work very hard every single day.

Frankly I am really pissed. I really wish  CFS would come with some visible symptoms you know, I really do.

1 comment:

  1. I know how it feels, that's basically all I can say. I used to be mentally ill, I was cured 2 years ago, but I'm still dealing with the aftermath. It's not easy, because you can't see it and people judge you based on what they see rather than on what lies underneath. I know it's tough.

    I don't know who evaluates you, but I think it's the government. Whether this is true or not, I think many of those instances work the same. I know exactly what it's like to have to prove over and over that you're actually ill, to do the paperwork, to go on appointments and have those talks, which are often frustrating and almost never result in an accurate conclusion. I know what it's like to feel like they are pushing you to get better, even though you really want to take your own time for it because you know yourself best. I know what it's like and it sucks. But hang in there. You are going to be fine. As for the 15 minute conversation, if you haven't had it yet, I'd say: be as accurate and clear as possible. Don't beat around the bush and give him the facts straight. If they want 15 minutes, they can have 15 minutes, but then you're going to tell them like it is, and not the other way around. :)