Chronic illness - when others 'know' best

What do you say when someone tells you how you can easily cure or treat your chronic illness? I’ve always struggled with this, more so now it’s not in my native language.

I get people telling me how I can fix my illnesses all the time.

But I don’t know how best to respond without hurting the person’s feelings or pushing them away.

How do you respond?

Syndromes and hidden illnesses - “it’s all in your head”

When I say I have fibromyalgia, or sinusitis, or endometriosis, or now rheumatism everyone has an opinion about how it is best treated or what causes it.

The common average-person opinion here in Germany seems to be that fibromyalgia is either purely stress and a psychiatric illness, or muscular rheumatism. That the treatment for is exercise and psychotherapy.

Luckily most doctors no longer have this opinion!  Because over the last several years, researchers have found that muscular rheumatism is only a co-morbid disease, and fibro is really a chemical imbalance in the brain that changes how pain signals are processed.

For endometriosis, I usually get told to eliminate dairy and meat, and go on an antioxidant-rich juice diet. I already tried no dairy and meat, high fiber and vitamins (and antioxidants) for many years, it didn’t work.

You need to surgically remove the endometriosis and take ongoing hormone-suppression tablets to get the endometriosis to a manageable level - it never goes away. There is limited research that supports the theory that you can reduce the growth rate a little further by limiting extra estrogen intake from conventional dairy, conventional meat, parabens in cosmetics, and hormone disruptors from plastics that store food.

Rheumatism isn’t rheumatism isn’t rheumatism

Last week, I was diagnosed with a type of auto-immune rheumatism that affects joints. I don’t know what type yet - another month or so for additional test results.

When most hear rheumatism they think arthritis. And everyone has an opinion on (osteo) arthritis, especially older people. While I value and seek out my friends’ opinions because I know they also read research papers, I don’t appreciate advice that was out of date 20 to 40 years ago.

Gout treatment has changed in the last 3-5 years

The rheumatologist suspects I might have gout in my big toe in addition to the rheumatism. Or maybe hallus rigidus. Or psoriatic arthritis.

Gout is a very old disease. Everyone knows how to treat it, because they have known someone long in the past who had it.

Of course, my in-laws enthusiastically explained traditional low purine diet for managing gout symptoms.

But it is no longer best practice. These days, balanced, higher-protein diet that encourages maintainable weight loss, plus moderate exercise, is recommended.

Research has shown that a high-protein, high purine diet - one that should make gout much worse - actually improves gout substantially more than the traditional gout diet, which no one sticks to.

In fact, the traditional gout diet is _terrible _for diabetes - a large percentage of gout patients also have diabetes.

Avoid beer and fructose-sweetened drinks, lose weight, and maintain a healthy lifestyle - with a range of foods, a good amount of protein, and regular exercise - is now recommended by expert rheumatologists worldwide to treat and prevent gout.

What do you say when someone tells you how you should treat your illness based on outdated information?

Perhaps educate them gently?

When someone tells me about new research, I appreciate it! So, thinking people are like me, I often try to explain to those with outdated views, that there has been continual research over the last many years. Treatments, medications, and therapies have changed since they learned about the illness.

Unfortunately, I have found that most people hate being told that they are wrong or outdated.

In the beginning, I printed a resources from PubMed, a few published research papers and sometimes the well-known Spoon Theory. But no-one wanted to read anything. They just wanted to give their advice and feel good about providing you with the information to be cured.

Since then, I’ve found a verbal emphasis on “research in the last couple of years” can occasionally get people to listen.

But it seems few people will accept that they may be wrong, even in the face of current research. Especially not in a face-to-face discussion where they want to quickly provide advice that will fix your illness, and move on.

Nod, smile, and move on?

“Hmmmm, thanks. I’ll look into it.” has been my standard for a while now, as I’ve been low on energy to try to explain, and didn’t want to hurt people’s feelings.

It’s similar to the standard response to “How are you” – “Fine, thanks”.

No one really wants to know how you are.

So I usually thank them for their advice, and we move on to other topics.

But now I’m faced with being served very unappetizing (and unhealthy) food by my in-laws, because that’s what they truly believe will cure my suspected gout, and they think I’m too young, inexperienced and uneducated to understand this illness.

How do I explain that this food is bad for me?