Chronic Pain. Fibromyalgia. Chronic Fatigue Syndrome. These, and many others, are known as invisible illnesses. For those of us suffering from one or more of these, we completely understand the reason behind this title. For others, the reason may not be quite as clear. These conditions are known as invisible illnesses because you cannot look at those of us who suffer from them and see that they are there. In fact, with many of these so-called invisible illnesses, there is not a specific test which can pinpoint the problem. Because of this, many of us have been told that there is nothing wrong with us, or that we simply don't look sick.
There are times when I think it would be easier to have some sort of illness that everyone can see. I almost wish, at times, that there was a neon sign over my head flashing "SICK PERSON" to everyone around me. Most of the time, I use a cane to help me walk. Without it, I can often only manage a few steps at a time. You would think that the cane would be a sign to people that something isn't right. Unfortunately, this is rarely the case. I have gotten dirty looks, and have had people run into me in stores because I wasn't moving fast enough to suit them. I frequently use one of the motorized carts provided by many stores. If it wasn't for those carts, I wouldn't be able to get through the larger stores these days. Because you look at me and see a normal person, people have given me more dirty looks, and have even made rude comments.
The person with an invisible illness doesn't just suffer at the hands of those who are uneducated about our conditions. Many in the medical profession still refuse to acknowledge the existence of fibromyalgia, which has been proved to be a real condition. As many of you know, the first time that I mentioned to a doctor that I thought I might have fibro, he looked at me and told that fibro didn't exist. He went on to tell me that it was just something invented by doctor's to shut up hysterical, hypochondriacal women. I was so shocked by his response that it took me almost 4 years to mention it to another doctor.
Because of the culture of drug abuse that thrives in this country, most of us with chronic pain conditions are looked upon with suspicion right out of the starting gate. Emergency room personnel often assume that we are simply seeking pain medication. In fact, they have a term they use for drug seekers - frequent flyers. Now, there are many people out there who are seeking drugs. I will never deny that. However, those of us who truly suffer with a chronic pain condition must bear the brunt of the suffering caused by these people. We are not only distrusted by emergency room personnel. Often, the very doctors we go to for relief from the unrelenting pain we live with start out from a position of distrust. I am talking about the pain management doctors.
Pain management doctor's are trained to treat people with chronic pain conditions. Because of the abuse of the system, which is rampant, most of these doctor's now require that you sign a "Pain Contract". This contract spells out many of the rules and regulations we as patients are expected to follow in order to receive the medication that allows us to function. Some of the rules include using the same pharmacy, not getting pain medication from another doctor, monthly pill counts, and random urine tests. I understand that the doctor's are trying to protect themselves. I understand that those who do abuse the system make things difficult for the rest of us. However, because of the system we live under today, you and your doctor are placed in more of an adversarial position than one of doctor and patient. There is very little trust between the two. If the patient makes even one mistake regarding this contract, they can be removed from the practice with little or no recourse.
Because pain management isn't a large specialty, finding a new doctor can, for some, be next to impossible. And what rights do we have with regards to the doctor-patient relationship? Very few, as far as I can see. The minute you sign the Pain Contract, there is almost an assumption that you are guilty of something. You feel as though the doctor, and the staff, are just waiting for you to screw up. And even though you are told from the outset that you have the right to adequate pain control, you are afraid to tell the doctor that the medication he or she is giving you isn't working anymore. There is always a fear that they will decide that you are an addict and take you off what little medication you are taking.
For those of us with an invisible, pain-related illness, the system is broken. Because we suffer from chronic pain, we are looked upon by many as being weak, and quite often, as drug addicts. Unlike the "big" diseases such as cancer, heart disease, and AIDS, we don't have large organizations advocating for us. Quite often we are alone to fight an uphill battle that we cannot win. Alone, we have no voice, but together, we can become a force to be reckoned with. We need to contact our leaders on both a state and national level to make sure that our voices are heard. We need to contact medical schools and offer to talk to upcoming classes of new doctor's to help them understand the things we are up against in our daily lives. And we need to support one another, because right now, we are all we have.
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