Article: 5 Stages Experienced by Those with Chronic Illness

[Sly Saint]

I’ve been chronically ill for over 18 years (chronic illness includes chronic pain). In 2001, I came down with what appeared to be an acute viral infection but I never recovered. It compromised my immune system, leaving me feeling as if I have the flu 24/7. I call it the flu without the fever.

Not everyone will go through these stages in the same way or in the same order that I have, but I’m confident that this list will sound familiar, both to those who are chronically ill and to those who care for them (if the former are fortunate enough to have the latter—I recognize that not everyone is).

Stage 1: The search for a diagnosis and adequate treatment
Getting a diagnosis can take one doctor’s visit or it can take dozens. It took me six months to be diagnosed with ME/CFS (myalgic encephalomyelitis, also known as chronic fatigue syndrome). However, being diagnosed, I must admit, hasn’t helped me much. ME/CFS is a serious illness, but the money isn’t there for research into its cause or causes, let alone adequate treatment. (I live with several other chronic conditions, including a bout with breast cancer, interstitial cystitis, and osteoarthritis, but this post focuses on what I went through when I got sick in 2001, as described above.)

The search for a diagnosis and then adequate treatment is accompanied by the stresses that come with having to navigate the health care system—over and over. It takes its toll, both physically and mentally, even for those of us who are fortunate to have adequate health insurance.

full article here
https://www.psychologytoday.com/gb/...12/5-stages-experienced-those-chronic-illness

 

[NelliePledge]

Good article I reckon- I’ve only been knowingly dealing with ME for 4 years so mainly the earlier stages are relevant to me. Some of the struggle around work she described in the denial stage for me came before the diagnosis.
Bbecause I had prolonged grief about parent’s severe dementia and worked with my counsellor on coping with that I reckon that’s helping me live with my own illness.

 

[Peter T]

I suspect it can be more cycles than stages, especially for those of us with a variable condition.

I have over the last few months had someone help me sort twenty years plus of paperwork, filing and unsorted papers from periods when my health was bad such that post was not even opened. This has effectively meant indirectly reviewing the last twenty years of my health. This has meant reliving the highs and the lows, perhaps with more focus on the lows as that was when there was substantial amounts of unopened post.

Perhaps for me the biggest recurring issue was unrealistic optimism during better periods and an ultimately unhelpful and unfounded belief that any remission would be permanent.

 

[rvallee]

This is an excellent article. I particularly like how it addresses what is by far the most common reaction and behavior, literally the exact opposite of what the BPS model claims and what Wessely awkwardly, and incompetently, described completely wrong in his illness narratives:

The idea that I had a chronic illness that would change the course of my life at a point when everything was going so well for me, personally and professionally, was unthinkable. When something is unthinkable, denial takes over.

For me, denial felt as if something were tearing me apart mentally. I was denying mentally what I was feeling physically. In other words, I felt sick while, at the same time, I was denying that I was sick.

My impression is that denying physical illness is far more prevalent than the opposite, something to the order of 10x and above. Far from being certain from the start about a precise physiological explanation, the first stage is always denial and pushing through. The reality of chronic illness could not be further from the truth of the caricature required by the BPS model. Most pwME deny, push through and even favor the typical bland advice of the "have you tried yoga?" type all on our own. The PACE model literally could not be further from the truth in that regard.

And this sad reality, millions of times over, brought about by misleading advice from people who made malpractice the basis of their career:

I think it’s highly possible that continuing to work is one of the reasons I’m still so sick today.

It's impossible to tell with hindsight, but every last one of my relapses came from pushing through, and it's very likely I would not be fully disabled and this miserable today if I had been given competent advice.

This is important and especially frustrating considering the caricature that BPS promotes of the "sick role", which invents a completely fictitious behavior that only exists with the full validation of medicine, something medical professionals really should understand yet clearly often don't:

For example, some people aren’t comfortable around illness.

This is also very true about "doctor shopping" and illness-seeking behavior in general. Nobody likes to be in hospitals or clinics if they can avoid it. NOBODY. The list of things people would rather do is almost infinitely long since you can always think of more pleasant things to do, like burning your eyebrows or washing your entire bathroom twice over. People like doctors, but either at a distance or in circumstances in which they actually help, which is definitely not the case with chronic illness.

 

[rvallee]

Perhaps for me the biggest recurring issue was unrealistic optimism during better periods and an ultimately unhelpful and unfounded belief that any remission would be permanent.

Same here. The BPS model literally could not be further from the truth. We hold on to remissions like they are solid ground in the middle of the ocean and believe with all we can that it will all be over soon, deny as long as we possibly can.

 

[alktipping]

yes to reiterate what rvallee said it took me ten years to finally except that M E was here to stay .also not having access to the internet back then and only poor medical advice I had absolutely no idea that my future would entail nearly twenty years of being housebound . I wonder how many people died from ulcers and other bowel diseases thanks to the unbelievable self righteousness of the pschobabblers.