Having to be part of “the system” when you have a chronic illness

[Leavesofautumn]

I happen to have Crohn’s, but I’m sure this happens to people with many different conditions.

I’m sick of constantly having to go to appointments, constantly being told there’s nothing wrong although I know there is, diagnostic tests, receiving patronising letters telling me I have IBS and should take up yoga which I already do, having to phone the IBD nurses line multiple times just to get someone to listen, chasing up appointments etc. Then every so often I’ll get sick of it all, write to PALS about it, they’ll eventually write back and say sorry and then more stuff will happen.

I am well aware that the NHS is struggling, before anyone starts. But having had this condition for years, I’m sick of having to deal with it all. It’s not fair that patients need to be so active in getting things done.

I’m sick of this constant merry-go-round. The system causes me about as much stress as the illness in the first place.

I have recently been diagnosed with fibromyalgia, and if I go to the GP they just say 'oh that is fibro you just have to put up with it' I am very annoyed that it is a cop out, especially as I am pretty sure there is something else going on.

I know it is not quite how you are finding things, but it seems dealing with any chronic illness is a nightmare.

People who don't have chronic illnesses don't tend to understand how much time and headspace it can take up just having appointments and dealing with the system, never mind dealing with the problem itself.

Yes, theoretically, a couple of appointments, a checkup or a scan and a few blood tests might only use a few hours of your time over the course of a year, but you've got to organise them, reorganise them, interface with multiple online systems, make multiple phone calls, make sure that such-and-such an appointment happens at least two weeks but no more than three weeks before some other appointment despite the obstructions placed in your way by the person booking you in, then reorganise all that when the second appointment is moved to some other time, make sure that the right documents get to the right people, chase up results and referrals that disappear, order and chase up prescriptions, follow up on errors, track down pharmacists who have stock of a drug that's difficult to get, deal with prescription admin fuckups, and on and on and on. It's wearing.

Oh I could have written this post today!
I have asthma.
I also have mental health (not anxiety).
Today I was spoken to like I was 7 (when the doctor would actually talk to me, most of the time he spoke to my husband) and told I didn't have a chest infection and could my chronic coughing fits (that are making me collapse on the floor and lose my vision from dizziness) be anxiety?
I pointed out three times that I have asthma and that during the triage when the receptionist asked what had I tried, I mentioned my inhaler.
He said "yes you can keep using that if you want but you should get a lateral flow test"
ARRRRGH I don't have covid I have asthma, it's not even the same symptoms, treat my asthma you stupid man, I need Monteleukast, if my inhaler was working I wouldn't be here!
Now I've lost a day of pay and no sign of this cough abating.
This is why I don't bother going to the doctor. Well people always say "have you been to the GP?" when you're ill but I just don't see the point, they don't help and I have to waste precious energy getting out there to be treated like this.
It's so frustrating.

I have ME and am currently dealing with a few NHS specialists, GP as well as social services. It's like a never ending merry go round and takes such a huge amount of mental and physical energy with, nine times out of ten, no discernible positive difference at the end, that I often think it would be a lot easier not to even bother trying to get any help or intervention. I know exactly how you feel OP. It's unbelievably draining, stressful and frustrating, feels pointless most of the time, and makes being ill so much harder.

Yup. I'm a lot better than I was a few years ago with CFS/ME, but I'm actually really annoyed now (that I have a bit more energy!) that for years I was left with no advice or guidance or offered any support or understanding to manage feelings and emotions around the fact that I spent years in my thirties feeling in my nineties. 😥

I can't see this ever improving for people in our position either.

I have me/cfs and on top of that have put on a LOT of weight over the last few years. But everything is put down to my weight.

But I can't walk far and have no energy to cook. I am really worried I'm digging myself an early grave and have no idea how to stop this or how to get support.

I can sympathize as a life long migraine sufferer. What drives me nuts is the eye test requirement - hmmm, best go for another eye test just to be sure it's not caused by glasses, even though you've had them for a quarter of a century and it's NEVER BEEN DUE TO A FUCKING WRONG PRESCRIPTION.

Ahem.

I could have kissed the doctor who finally said "well, I'm supposed to tell you to get an eye test, but it's obviously not your eyes, is it?".

My biggest allergic reactions always happen in the hospital or doctor’s offices. I’ve spoken with my allergist and tried to find out how to get records flagged properly and everything setup to stop it from happening and she says it’s impossible. The only thing I can do is constantly advocate for myself every single second and hope for the best. Heaven forbid I’m in an accident or have surgery and end up unconscious. I keep putting off essential care because I’m afraid of what will happen.

the medical system can’t actually handle real people.

I do feel that unnecessary barriers are put in place by the NHS to access help too e.g. very long forms to fill in prior to assessments etc. I remember feeling like I needed a nap just by opening the envelope and seeing the length of the form I needed to complete within "4 weeks or we will assume you no longer require our services". Just one example of countless others, I'm sure.

It’s so stressful isn’t it? Thanks for all your replies.

This is so annoying. I'm under the eye hospital. My vision rarely changes.

I have occasionally got headaches relating to my glasses / prescription. But it's almost always because they're new.

I do remember when much younger every single medical issue was blamed on my vision - the random vomiting (later discovered to be epilepsy) and the headaches. It was later discovered that I have some complex neurological shit that probably caused the constant headaches. And the epilepsy is probably genetic.

It helps (a tiny bit) to know there are others in the same, or a similar, situation.

My DD is disabled and it's a constant fight to get any help at all. I've had to learn to be assertive as otherwise we don't get anywhere. It is draining though. Especially having to make sure school are helping her in the right way on top of medical stuff.

My COPD inhaler isn't working properly as I still get horrendously breathless. I have all the symptoms of asthma but they kept telling me it's anxiety about COPD. Ended up having several attacks (anxiety induced apparently) and they finally did that breathing test thing. According to that I have asthma. But I cant have asthma medication until the COPD consultants give the go ahead. They meet once a fucking month and my name might not be on the August list, or even the September list.

According to multiple websites I have asthma symptoms. I do NOT have COPD symptoms. I can tell you what is giving me anxiety...and it's not my breathing. I've been trying since February. Seven fucking months and counting 😡

DD has a chronic condition.

I suspect I have spent more time chasing appointments and being fobbed off than she has actually spent in appointments .... I have no idea how people manage if they are not assertive or if they don't have the time or energy to keep chasing. I really worry how DD will manage when she gets to an age where I can't reasonably advocate for her any more.

I have fibro/me and have pretty much dropped out of the system for these.