A Definition of Invisible Illnesses (Part I of a Series)

Posted by: nerdse on: September 12, 2009

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First of all, dear readers, I must apologize. Being both new to blogging and having several invisible illnesses that are currently taking quite a toll on me in flare ups, I had posted this, then gone about posting the 2nd part the wrong way – erasing this post, which I had completed and have to rebuild. Having brain fog is not a good thing!

So, for those of you who might be stopping by because someone sent you a link to a site about invisible illnesses, and you would like to know what in the world they’re talking about, you’re right: Invisible illnesses are not discernable by looking at someone. And the main way people find out that someone else has an invisible illness is when they are disgusted or put off by someone’s seeming reticence at a gathering, and you make a comment to a mutual acquaintance: “What’s wrong with her?” (I use “her” because 90% of invisible illness sufferers are female). And your acquaintance might say, “Well, she’s not feeling well. She has (whatever the illness is) and she thought she’d be OK to come, but her medications aren’t holding and she’s feeling badly. She’ll probably be OK if she can just rest.” Your first comment is likely to be, “But she doesn’t look sick!” Hence, invisible illness.

One question often comes up in the II community: Would you rather have your illness be visible? Believe it or not, may would rather they stay invisible. Face it, we’re all a little vain. Me, I wish there was some way to make it visible only in certain circumstances – like, oh, going to see the doctor when you feel really terrible? Other than those times, and the times when someone gets nasty about it, I guess I don’t really care. And when I say sometimes I’d like it to be visible, it doesn’t have anything to do with taking on the sick role. It’s a matter of wanting to be believed. I don’t want you to wait on me or treat me like I’m made out of fine porcelain. I’ll let you know if there’s something you want to do and I need to bow out.

That term, “taking on a sick role,” is a nursing term for those people who suck the life out of you because they’re sick. You aren’t (or don’t appear to be), ill; they are. Therefore, you must be punished for your health (or appearance of same). They have endless demands, and nothing ever suits them. You end up torn between guilt and the desire to put them out of your misery. And besides, they’re travel agents for guilt trips. Unfortunately, even the most stoic II sufferer can get this way from time to time. But most of us don’t spend all our time like that, and if you’re a good friend and you see us doing this, most of us want you to call us on it.

Remember me stating how many II sufferers are female? My grandmother used to say she didn’t know what doctors would do without a female’s reproductive cycle because they blame everything on that for your entire life. That’s still true today, athough they cloak things in politically correct language. But instead of saying that directly, they hint that there’s just something about women’s physiology that makes their illnesses seem a lot worse than they really are, or that makes ordinary complaints seem intolerable. It must, of course, be stress, so you’re sent packing off to the nearest mental health professional – who may not agree with the diagnosis, but unless they take you through a few sessions, they can’t know for sure. And, everyone knows reducing stress helps you to cope with the problem. Plus, the only way they can prove that you’re not bonkers is to have enough sessions to prove, at least semiconclusively, that you’re just find and dandy in the mental health department. So it all works out in the end, right?

Well, not always. A lot of that depends on where you live. Contrary to what the mental health professional groups would like you to believe – and how they’d like the world to act – there is a lot of discrimination out there. For a lot of people with invisible illnesses, this creates a huge problem. Many insurers, especially Medicaid, Medicare, and Tricare, under which many II sufferers receive care, make continued care contingent on compliance with cognitive behavioral therapy – aka counseling – not because their illness is all in their heads, but to make sure they have adequate coping skills, as part of a comprehensive treatment plan. Some HMOs require the same. But if the II sufferer goes into remission and tries for a job – they have to risk their bosses finding out somehow after they’ve been hired without disclosing, or disclose and risk being turned down for a job they’re more than able to perform.

With the obesity epidemic, we now have another source of blame – you either weigh too much, too little, have dieted too long, are eating wrong, have done too much “yo-yo” dieting, not enough exercising – in fact, I defy you to find one illness that isn’t blamed on obesity in an overweight person, even if thin people have it as well. I’m not really sure how that works out, but apparently if fat people become thin, they never again are ill in their entire lives. And if smokers just stop, they will never again be ill, either.

Hmmm. Maybe if we make everyone either get fat or smoke, then get thin or quit smoking, everyone will be healthy? If you follow what doctors tell fat people and smokers to its logical conclusion – that fat and smoking are the cause of all illnesses and if you lose weight or stop smoking you will never be ill – then the way to cure all diseases is to make everyone choose one of those habits for a while, then stop it.

Ridiculous, huh?

So, being that invisible illnesses are mostly found in females, let me ask a question: What do you think happens to a guy who gets an invisible illness? If you guessed that the men around him give him a genuine Sissy Certificate, signed in testosterone that they believe the sick man lacks, you’re on the money. Even many women are at least surprised to find males who have invisible illnesses, although they are more accepting than males of the phenomenon.

The phenomenon of welcoming males with II into the fellowship with the girls, though, rests in the faulty assumption that if enough males have II, then physicians will legitimize what they have and find a cure – or at least some way to treat it. Or if nothing else, encourage more research. Women often quip that if males had what they have, there’d be a cure, because men are generally believed when they say they are sick. But that’s not always true.

There are invisible illnesses that are recognized as “legitimate” – lupus is one, rheumatoid arthritis is another. Damage only becomes visible with time, sometimes not even then. And there are diseases like chronic fatigue syndrome and fibromyalgia that I’d estimate roughly half of all physicians either outright believe is imaginary, or who have serious doubts as to how legitimate these diseases are. It’s difficult enough dealing with an auto immune and/or chronic invisible illness that puts you in pain all the time – it’s really bad when no one believes you.

Chronic illnesses are all around us. In the US, it’s estimated that up to 53% of the population has at least one chronic illness, and many of those are II. Many people have multiple chronic conditions. If you want to see the impact of the volume of chronic illness in general, just think of how many people in your workplace, church, neighborhood, etc., have asthma, COPD , CHF, Hashimoto’s (low) or Grave’s (high) thyroid disease, and/or diabetes, just for starters.

In Part II, which is a lot longer due to the amount of subject matter that needed to be contained in one article, we’ll go into some reasons why doctors don’t believe some II are real, or why they stay quiet if they do.