Fibromyalgia, ME/CFS/CFIDS, myofascial pain syndrome, even depression and anxiety - all of these things I am burdened with are invisible to EVERYONE but me. Symptoms may be visible sometimes, such as when I'm the only one in the room sweating profusely, or when my hands shake. But most of the time, there is no objective evidence of my illness. My blood tests come back fine, every time. Luckily, my doctors believe me about my pain. That is far as their support goes, however.
I am still treated by my GP like a hypochondriac. The last time I went to him with new symptoms, he told me I had hypoglycemia, even though the timing of the symptoms "didn't make sense" (his words). It wasn't his hypoglycemia theory that was wrong, it was my symptom report. He has now started saying things to me like, "I can't help you". Literally.
When you have diabetes, your doctor looks at your test results and heaves an inner sigh of relief. He knows what to do. He looks at you straight and gives you a diagnosis and treatment. When your test results are "normal" he feels helpless, confused, suspicious. He tells you how to eat and exercise better, and sends you to a psychologist. He may write in your chart that you are malingering, or causing your physical symptoms because of emotional disturbance (a somatic disorder). It is now in your file that you are a 'difficult' patient, and that colours the way you are treated by anyone who sees your file.
There are people out there who adamantly believe that your diagnosis is "made up" - often by the psychiatric or pharmaceutical lobbies in order to push their products. They call your ailment a "trend", a "fad", a "designer disease". All of these labels devastatingly invalidate the very real suffering a person with this kind of illness experiences. When even our doctors don't believe us and can't help us, we are left very alone, and all we can do is try to "cope" with our symptoms. We are bitter, defensive, angry, and hopeless. We feel abandoned by the medical establishment. We fall through the cracks and flail about in desperation.
Even worse, we give up on ourselves. We stop looking for our own cure. We slide into powerlessness and forget to take care of ourselves - if we knew how to do this in the first place: a lot of people with fibromyalgia and ME/CFS are people who have always put caring for others above caring for themselves. We have always martyred ourselves. We thought that was what good people did. This tendency contributed to the breakdown of our bodies, and contributes to our decline and, in part, prevents us from gaining back our health. We can't admit this, however, because it is like admitting two things: 1) our illness is in our heads; and 2) our illness is our own fault. Neither of these things are true, and believing them to be so is just another stressor.
We are fighting a war against everything and everyone around us that subtly and not-so-subtly tells us our suffering is "not real". Our post-modern society hold science as the truth, the whole truth, and nothing but the truth. We don't remember that once upon a time, science could not diagnose diabetes, celiac disease, or hundreds of other diseases that are now accepted as real and never invalidated. Each day we think that scientific knowledge is complete, and thus if science can't see something, it doesn't exists.
Only we know our subjective pain, fatigue, weakness, soreness, faintness, restlessness - and a thousand other symptoms - are real. They are so real to us that we can barely take our minds off them. We have nothing else to talk about, and other people fade out of our lives as though we've suddenly become obsessed with having ghosts in our houses. Our illness is our poltergeist, and throws everything we want for our lives into chaos and havoc. And we cannot even prove it's existence.
Above all, we with invisible illnesses that even our doctors can't see, need VALIDATION. We need you to believe us, we need our doctors and our families, friends and the public to acknowledge the ghosts of our suffering, to treat them as real physical beings destroying our lives. We need you to see these ghosts as facts, as givens, and then act accordingly. Erase every doubt from your behaviour towards us if you can't erase the doubts from your mind. Don't bemoan the person you once knew who was not plagued by her symptoms. Accept us as you would accept a new mole on our face, as you would still accept us if we gained 50 lbs (and some of us have). And don't be afraid. Our symptoms are only ghosts because you are afraid of them.
When you validate our experience, we find the courage to fight for ourselves. We feel you are behind us, cheering us on. That kind of support is absolutely essential for us to regain a sense of power over our lives, confidence that we can survive our illness. We can't do it alone. We can't take our own care seriously if no one else agrees it should be a priority. We can't exorcise the ghosts unless we believe in their existence, and we can't firmly believe unless you do too.