Chronic fatigue syndrome classed as psychological illness on work's absence documentation

[OliveK]

I am suffering from post viral fatigue after a horrific year of illness. Obviously I am hoping that this is reasonably short lived. But i am also aware that I could be on a pathway to CFS/ME/long covid.
I was looking into the absence procedures for work and they require you to classify your illness/reason for absence.
AIBU to feel uncomfortable with CFS to be listed in the Psychological category? It just seems to be harking back to all that yuppie flu bullshit. I'm not wildly comfortable with having a long term "Psychological illness" on my record. I mean no disrespect to anyone for whom that may be the case. But I am physically unwell!

I think unless you've been there with a physical condition and had to sit through numerous people telling you that it's all in your head it can be hard to really understand why someone like the OP could react the way she did to the form.

I don't have one of the conditions talked about but mine kind of mimics anxiety, fatigue, brain fog, nausea, racing heart, are some of the symptoms. I knew it wasn't anxiety I just knew it yet I'd go to the drs and they would increasingly talk to me like I was an eejit that just couldn't understand that it was anxiety. Finally a new GP from the US joined the practice, I saw her and straight away she said oh that sounds just like x, referred me to a cardiologist and I was diagnosed. It was a horrible time, I was so ill at times and all the Dr would do was suggest therapy or suggest a different anti anxiety med(I tried them because I stupidly thought when they didn't work they might go oh wait a minute maybe it's not anxiety), meanwhile I was scared because I didn't know wtf was wrong with me and nobody would help me find out.

I would have felt the same way if I went in about anxiety and they kept insisting it was my knee that hurt and I knew it wasn't but all they would treat was my knee.

That feeling is ramped up when people ask what is wrong with you and you tell them and they roll their eyes a little bit or you can just tell they are thinking 'well isn't it convenient that all you can do is lay about all day' like they think you're making it up too so you can doss about.

That was long sorry but I'm having a bad flare up at the minute and feeling pretty frustrated with my limitations.

@QuestionableMouse I'm so sorry to hear that. It is awful this is still happening.

Blimey if I knew all I needed was some CBT and positive thinking!

I lost 2 stone when I first got it as I didn't have the energy to eat - I went from working our 4 times a week to not being able to get down stairs - it's a fucking horrible thing (no idea if I have CF/LC/ME because the medical profession don't seem to care.

I have been back to the gym 3 times a week for the past 2 weeks - felt great - this week I have missed 2 days of work because every joint hurts, I am physically exhausted and I could sleep all day.

I'm a working single mum of 3 - I wouldn;t wish this shite on anyone

Optimising your nutrition can only be a good thing. A complex B vit can help too.

This is precisely it. Except with CFS, even after diagnosis, this still carries on.

@TextureSeeker what were you diagnosed with? Please don't worry if you'd rather not say.
I'm sorry you're feeling unwell, I hope you pick up a bit soon

POTS. I hate saying it tbh because I've heard so many people lately call it 'one of those munchausen things'. It feels like there is real stigma. It can vary between mild or severe so even people on the milder end can be quite unsympathetic to put it mildly. Tbh in the colder months I'm mainly ok, I can cope relatively normally but once it starts getting warm it's curtains for me. This is what has happened to me lately. All Winter I was running, working out and I was fit as a fiddle(if a fiddle almost blacks out everytime they stand but mainly well for me) then the weather warmed up a bit and I went for a normal run not really thinking and ended up spending 3 days stuck to the sofa with horrific nausea and brain fog, so tired I just napped on and off all day and a resting heart rate of 100. I've tried all of the drink more water, exercise more, take salts, wear compression garmets, my diet is clean as a whistle but still I end up in heap until October. I've only recently been prescribed meds so I'm really hoping this summer will be different for me 🤞

POTS is a really interesting one.

I wonder what the incidence of these weirder illnesses is over time. Did people just fail to thrive and potentially die young of neglect poverty, in previous generations?
Or is the incidence increasing because our world is toxic in various ways?

I’ve NC for this.

I have long Covid OP. Since 2020. Not saying you have LC, but my symptoms are similar to CFS with some bizarre extras thrown in (phantom smells, tinnitus, brain fog etc). But the fatigue is crippling, even with as much pacing as I can do,

Although LC does have some symptoms such as anxiety and depression, it is definitely the physical impact which is hardest to overcome. You cannot “power through” the fatigue, however much you try. I had to retire early because of it. My life is turned upside down.

I would absolutely tick the neurological box if you have CFS. Anyone who tried to tell me this is psychological would get both barrels from me, and then some.

I hope things get better for you soon.

Exactly this.

The long Covid clinic workshops I attended (zoom) focused on mental health - but not because it’s a mental health condition, but because sufferers need tools to get them through the days. Lots about mindfulness, grounding, breathing. Linked to pacing too, clearing your mind to rest fully.

I’ll never forget logging in to the first session all hopeful for help, and then one of the suggestions was to use a shower stool to enable you to still shower each day, and another to write a checklist for when you leave the house - keys, oven off etc. Other practical tools basically, but the lack of anything actually to cure it was honestly devastating. I became depressed. Not the clinic’s fault, they just tried to offer help with practical things. It was all they had.

One of the worst things day to day, is people saying “you look WELL though”. When I worked, I got this. Yeah, because I’ve spent all weekend pacing just to be able to come in for a couple of hours for a meeting! WFH kept me going for a while but in the end I had to give in to it. The only person who truly understands is my DH, because he sees it, and how it changes me during crash days.

POTS is also linked to long Covid. I don’t personally have it, but share some symptoms - dizziness, brain fog etc.

OP, does your workplace have an Occupational Health department? Maybe request a review/assessment for a few weeks prior to returning to work. They'll know the background of your condition and won't be classing it as psychological, and will be able to make the appropriate recommendations to your employer. Best of luck.

There is no way I would let someone categorise my ME as a psychological illness on any form

This is true for me too. I went from working full time in a very full on job to being so exhausted that I could hardly walk from my bedroom to the bathroom. Losing words (which as an author is frankly terrifying!) No appetite - living on a slice of toast a day. Hair falling out in handfuls. Genuinely thought I had cancer for a while.

Even now, going on two years later, I have to be careful and pace myself. I had a really good day last week and did some decorating that I've been putting off. Paid for it by waking up the next day feeling like I had the flu, with terrible anxiety, and spent most of the day in bed.

Unless you've experienced it personally then it's hard to understand just how fucking awful and relentless it is!

Lots of people confuse psychological with psychosomatic, so I can see why OP doesn't want either on her record.

I spent a while seeing a physiotherapist who kept telling me my pelvic pain was psychological and related to pregnancy loss. I pursued clinical referral and it cleared up after surgery.

The problem with labelling anything psychological is that employers will think mindfulness, relaxation and maybe some counselling will help with a cure. They'll think medication is available. This doesn't help anyone.

My condition (Myasthenia) is quite interesting in this sense because there is documentary evidence of it going back hundreds of years (it has some key visible tells eg ptosis) despite being largely invisible.
Historically some doctors realised there was a physical cause and others believed it was mental.

Eventually scientists worked out it was a fault at the neuromuscular junction (a physical cause) caused by a number of causes (there are autoimmune and other types) but even now out of date doctors fail to diagnose because they don't understand the nuances (eg. Basic tests won't pick up all the different variants). I went over 20 years being told I had chronic fatigue/depression/etc before doctors finally confirmed I had Myasthenia

It isn't a new thing, but testing has advanced (they have discovered a number of new antibodies/genetic causes in the last decade alone) . But still some people wait years or decades to be diagnosed because it is poorly understood by general practitioners etc

But it's not new, or imagined, or anything. People have always had it. But they would have been either confined to bed or seen as weak and ailing (or lived much shorter lives)

@TextureSeeker thank you for replying. That sounds awful. It's actually something I'd considered asking my GP about as the symptoms all tick boxes for me, but I know lots of them overlap.

Thank you everyone for your replies actually, it's so useful and interesting, and I'm so sorry to read of so many people who are unwell, it's just awful.

There has been tonnes of research into LC over the past few years and LOTS of evidence that it is a physical/physiological illness. Evidence of viral persistence, mitochondria dysfunction, muscle changes, inflammation etc. Papers published in Nature, Science etc.

The problem is that the public and even many doctors don't know this.

The other problem is there still aren't tests for it or any drug treatments because when the mitochondria don't work, the reduced energy output causes all sorts of symptoms. When the government gets private companies to decide if we are ill or not the people with LC/ME/CFS will be stuffed.

Best of luck to any others dealing with this.

The issue isn't there isn't any 'pathology' the issue is they can't find the problem, that doesn't mean it doesn't exist. Long covid was evident of this when suffers were still reporting breathing problems but standard scans and xrays found no evidence of disease until researchers carried out non standard tests . Itv news covered this at the time. Standard tests don't always spot or detect disease. This is known and accepted in the medical world , nhs also directs medical professionals to go by symptoms as well as test results however the reality is for these types of conditions that doctors DO tend to only go by test results and blame everything else they can't uncover on to 'Psychological related' . At their level I'm sure it's not their fault but more research has to be carried out into long covid and cfs especially as they know it tends to be triggered from a viral illness so to say its Psychological is mis leading.

Have you investigated the vagus nerve stuff? There’s a Facebook group that is experimenting with tens machine and vagus nerve, think it’s called a vagus adventure. Run by Dawn Wiley. There are research studies being set up.