Is Your Illness Invisible?

It seems I hear at least once a week from someone who is desperately seeking the answers for symptoms, and no doctor will put a label on them.  Extreme fatigue, painful muscle aches, pelvic pain, numbness, swelling, a feeling that you're just not "with it." No label may mean no treatment... frustration, more pain and no relief is the result.

These patients ask me what they can do.  Who can they see?  Who will expend the effort to help them get the answers they need?

The problem is that most of these illnesses don't have specific, definitive tests.  Many don't even have names.  There are sets of symptoms that can be aligned with dozens of diseases or conditions, but not one, specific disease.  Among these "invisible illnesses" some have been named in recent years, but older doctors (in particular, and mostly men) won't admit their existence.  ("If it didn't exist when I was in medical school, then it doesn't really exist at all.") They tell their patients, most of whom are female, that their symptoms, and their illness, are all in their heads.

Further, we, as patients with these symptoms, create some of the problem for ourselves, too.  We demand names for things that are, so far, nameless, because we think a name will cure us or relieve our symptoms.  Sometimes that just can't happen.

Here's a way to think about it:  the symptoms for multiple sclerosis began to be documented in the early 1800s.  But MS was never named until the late 1800s.  What happened to all those people who sought diagnoses in the intervening 90 years?  Specific dementia symptoms were documented almost 100 years before Dr. Aloysius Alzheimer attached his name to them.  Does that change the progression of the disease?  Not really - it just gives us a way to talk about it.

Both these examples do prove one thing - that, usually, once a disease has a name, then researchers will begin seeking diagnosing tests, treatments and cures.  We're seeing this now for some of these invisible diseases -  fibromyalgia, chronic fatigue, lupus, and other auto-immune diseases. At least some progress can be made, even if today's patients may not see it in their lifetimes.

If you are a patient with an invisible disease, what are you supposed to do?

There are actually a number of great online resources for you, if you are one of these patients.  Here at About.com, we have sites for some of them:

• Fibromyalgia and Chronic Fatigue
• Rheumatoid Arthritis
• Headaches & Migraines
• Thyroid Problems
• IBS
• Rare Diseases (which go undiagnosed for some of the same reasons as invisible diseases)

There is also the Invisible Illness Advocate, calling attention to the many professionals who will help patients.  If you have an invisible illness, or have symptoms that no one seems to be helping you with, then you may also want to take their survey.  They are assessing the relationship between medical professionals and their patients who seem to have invisible diseases - perhaps like you.

If you are one of these folks who suffers from an unnamed, invisible illness, spend time with these resources.  Do online searches.  Give up on doctors who are dinosaurs, those who refuse to believe a new type of medical problem can develop over time.  Find yourself a doctor who is willing to work with you - there are searches and listings for these doctors. Participate in online support groups with others who suffer as you do.  This "crowdsourcing" (meaning - sharing of ideas to come to useful conclusions) can be immensely helpful to you. Empower yourself with all the information you can get, and...

Please - just don't give up.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Learn more or join the conversation!

_{NEWSLETTER | FORUM | BIO | TWITTER | FACEBOOK}

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Photo © Robert Kneschke - Fotolia.com