Chronic illness is a fight. That’s why.
Let me tell you a story. A story of my life right now.
Way back in May I was given a provisional offer for a job up the other end of the country. Meaning living independently and working full time something I’m not really well enough to do so I need all the adjustments I can get. In the lead up to this becoming official I filled out many a form. One of these was a health questionnaire in which I detailed the adjustments I need to be able to do the job and why. I then attended an appointment which recommended said adjustments. However I still get an email asking me what adjustments I need and get a response saying I must apply to access for work AND that I can’t have flexible working allowance until successfully completing a period of probation.
And maybe these things are reasonable, but hear me out.
It takes 3 weeks to hear back from access to work. I start in 4. Had you told me before I had accepted my offer and started looking for houses then fine I get that adjustments cost employers money and they need that money back in some way. Access to work is a way to do that. BUT we know how poorly governmental disability help treats ME/CFS and associated conditions and guess what I have. ME/CFS and associated conditions. I applied for a blue badge when I was so poorly that I could barely walk around my house without finding myself on the floor and got rejected because that wasn’t enough. I wold never get PIP because I seem to function seemingly well yet I can’t keep a clean and tidy space, I can’t stand in the shower, I don’t shower, wash or brush my hair anywhere near as much as I should. I have to sit down to cook and have to keep it really basic as I struggle to coordinate and because brain fog is a barrier.
So what if I get rejected from access to work. And in their defence I didn’t say as much as maybe I should of but I quite seriously will not be able to do the job if I don’t have assistive tech and my ability to get into work may be too difficult too often if I don’t have a taxi allowance. Especially considering I’ll also have to cook, maintain a clean space, maintain a clean body and ideally try make some friends up there.
As for flexible working what about when my endo pain is so bad I can’t get into work until 10am or I partially dislocate my hip 2 minutes before I have to leave in order to get into work on time. Or when my ME is too bad to actually sit through work all day and produce quality work but I’m still able to work from home and will likely be more productive than if I was in the office. What about those periods where medical appointments are seemingly never ending because I need them. This is anticipated upon moving to a new part of the country. I can anticipate a fight to get gabapentin up there and as my main pain medication I wouldn’t be able to work at all without it. I wouldn’t be surprised if that requires an appointment for one. Not all GP surgery’s are open outside of 9-5 hours. All of these things could prevent me from passing probation but could be remedied by a flexible working allowance, yet I can’t have one until I’ve passed probation.
You see the issue! Why would I be faking something that is causing so much stress. Relocating is stressful for anyone. Relocating with a disability just amps up the stress because there’s so much else to consider. Do I need this extra stress no? So why on earth would I be faking?
I honestly think the more awareness raised for these illnesses the better. So a) people are less inclined to think faker but b) so these barriers are easier barriers to cross.
I hope someone can relate to this issue of the barriers upon barriers and extra stress. As always I’m grateful for being functional as I am but it certainly isn’t without challenge.