Institutional support
Ah yes. The ‘outside’ consequences of these illnesses on life, such as school & work etc.
I have heard stories about some wonderful organisations that have held job positions for months and those that allow shorter hours and work from home. I applaud you!
Then there are those that seemed not to care and worse, not even try to.
Some organisations have illness allowances or special consideration (schools & universities) for this sort of thing. This is great. However, we have to jump through a lot of hoops to get the paperwork done.
For example, work will give you leave if you have a doctor’s certificate. So we need a doctors certificate – easy, right? NO. We can barely get out of bed – do you know how much energy it takes to go to the doctor? More than we have! And then it will take us a week to recover from the visit and completely slows down the process.
Ok, now we need to fill out the institutional form – easy, right? NO. Form filling out requires decision-making. We are too damn tired to hardly move, let alone think clearly.
So now we’ve filled out the form. All we need to do is hand it in – easy, right? NO. Some institutions require us to physically hand 
the form in. HELLO! What do you think is wrong with us in the first place!?
But, to be fair, it may be hard for organisations to truly appreciate what these illness are like, especially if some ‘leading experts’ say CFS doesn’t exist. And perhaps there are scammers out there trying to capitalize on actual suffers, who knows?
So what do we do about it?
I’m writing about it and providing a place for people to share their story. If enough people want to help, we can change this.
What can you do to help?
