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Personal Accounts: A Truly Invisible Handicap
Esther Reiter
Psychiatric Services 2004; doi: 10.1176/appi.ps.55.4.363
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Every day I live on the verge of suicide because of an invisible handicap called pain. This is not melodrama—it is my life. The quality of my life is slowly being destroyed by this pain and by the side effects of the various medications I use to manage it. The pain doesn't go away. I live with it and with the slim hope that a medication will come along that will treat the pain with manageable side effects so that I can again become a productive member of society instead of a burden.

Nineteen years ago, at 42 years of age, I had a stroke caused by an arteriovenous malformation in my thalamus. The result was left hemiparesis—and, of course, I was left-handed. Thalamic pain began to develop three months after my release from the hospital. Over the years this pain has grown progressively more intense, affecting every part of my life.

"Quality of life" is a term frequently bandied about by people who don't think about what the term really means. My quality of life is a direct function of the amount of pain I feel at any given time. Not a day goes by without some degree of pain, most acutely felt in my left arm and hand, the left side of my face, and my left foot. I wake up every morning in abject pain, unable to do a task as simple as showering without first taking my medications. I take 16 mg of Dilaudid (hydromorphone hydrochloride) and 200 mg of Neurontin (gabapentin) and then have to stay still for about an hour to allow these medications to work. Then I can get up and start doing the things everybody does to prepare for the day ahead. The amount of Dilaudid I take during the course of the day is a function of the severity of the pain; it hovers between 28 and 36 mg. My total daily dose of Neurontin is 600 mg.

With thalamic pain syndrome, it's not the same kind of pain all the time. Both the type and the intensity vary. There is a burning that is pretty constant. It's like extreme sunburn. There's a tight-muscle feeling, a tautness in my arm and leg, which I feel most acutely in my arm. My brain sends the message of "tight muscle," as if I were flexing the muscle on purpose. Or it sends a message for my toes and fingers to curl, which makes walking difficult. The spasticity generally stays all day, although it usually does not carry over into the next day, when I will probably experience one of the other types of pain. Spasticity is incredibly tiring. Sometimes I can fool the tight-muscle message with a Valium—that's a good day.

And there are days when my arm does a lot of uncontrolled moving. Putting my hand in a pocket is a good solution for that. I limit the things I do with that hand on those days and find ways to get around the problem. Then there's what I call the three-finger pain. It affects my little finger, my ring finger, and my middle finger. It feels like there is a vise wrapped around those fingers that is constantly being tightened. This type of pain is usually unaffected by Dilaudid or Valium.

I also experience what I call pain attacks. The other day I was on the telephone. The pain was at a manageable level, but then all of a sudden it wasn't. The burning sensation in my arm was followed by some spasticity and within a few minutes was intolerable. I had to end the call. I could barely breathe. I took 8 mg of Dilaudid—sometimes I take 12 mg in these situations—along with 5 mg of Valium, and I "shut down." I lay down and just kept quiet. When this happens I can't read and don't want music or television or anything that might stimulate any senses. I just want to be quiet. If I'm lucky, slowly over the course of the next hour or so the extreme symptoms will ease and I will be able to pick up where I left off. Sometimes I have to hang it up for the day. I never know. When something like this happens and I'm not at home, I have a variety of ways of coping—you do what you have to do.

I am one of the lucky people for whom sleep is accessible. For some reason I can get to sleep. Sometimes sleep is the best answer, although I prefer not to resort to it but rather to hang in there until it's regular bedtime. I have learned to nap, which sometimes helps.

Dependency on medication is much the same no matter what disease the medication is being used to control. You have to be sure you have the medication and that you have it in an appropriate quantity. With narcotics it's a bit more complicated. When I go away I need to figure out how much I will need, because chances are I won't be able to get a narcotic prescription. Not every doctor will write prescriptions for narcotics. I also need to be aware of when my doctor is going to be on vacation. Will I have enough medication if he is suddenly unavailable? If a doctor doesn't understand the nature of my pain or any chronic pain and doesn't know how—or is unwilling—to prescribe medication in the quantities I need, what can I do? Doctors and patients are often afraid of narcotics, each for their own reasons, and so people go around bearing the grinding weight of unnecessary pain.

In addition, pharmacies don't always carry large amounts of narcotics. The prescriptions need to be filled within five days. I call the pharmacy and tell them I will need a certain amount of the medication and find out when they will have it in stock. Then I telephone the doctor, ask for the prescription, and make sure the date of the prescription is compatible with when the pharmacy will have the medication. This may seem like a small thing to do in order to acquire the medication I need, but somehow these extra little steps detract from a "normal" life.

Many days the medication simply has no effect on my pain. Just as I don't know what kind of pain I will experience on any given day, I also don't know when I will get no relief no matter how much Dilaudid I have taken. Those are just make-do days. Then there are other kinds of days. Days of high-intensity pain, when I get some relief during the course of the day and then all of a sudden—and usually it's around the same time in the evening: late—I feel great. Actually great. It's about ten o'clock and I can work at the computer or clean or whatever for the next two or three hours, because I feel better than at any other time during the day. I try to take advantage of these times and do as much as I can. And without realizing it, it gets to be one or two o'clock in the morning, and I'm still at it.

In my case, "addiction to pain killers" is a myth. I do not take Dilaudid to get high—I don't even know what that means. The issue for me is, How severe is the pain? Do I really need this amount, or can I make do with a smaller amount? Why am I having this internal struggle about taking something that falls short of relieving my pain by only bringing my body to a place where I am able to merely manage the pain and get on with my life? Why am I not just taking what I need to get relief instead of constantly agonizing over the issue?

In this regard, laws and regulations begin to impinge on my ability to treat my pain. Is some doctor going to tell me, "You don't need to take such quantities. You're addicted" (whatever that means). I know that my body is dependent on Dilaudid. So what? Does that mean I'm addicted or that I'm an addict? And if I am, do I need to become unaddicted? I don't think so. I don't use drugs—I take medication!

Societal attitudes enter into the lives of people who take narcotics legally. Tell someone that you live on narcotics and see how their attitude toward you changes. This too interferes with one's willingness to take the amounts of medication necessary for relief. And you can't always just ignore it. It is part of the equation.

What would my life look like if I didn't have access to my medications? I know I would be immobilized, both physically and psychologically. I believe I would have no quality of life and hence no life at all. Just getting ready at the start of each day would take every resource I have. And what could I do? I have some inkling of what it would be like, because I know what I'm like on those days when Dilaudid doesn't reduce my pain. Sure, I can usually summon up the wherewithal to get up, shower, and dress, but I am basically useless for doing anything beyond that. I live in constant fear that because of the irrational attitude toward narcotics in this country, I won't always have such easy access to my medications.

I have been more than willing to try alternatives. I have tried massage therapy, acupuncture treatments, Chinese herbs, various courses of meditation, and biofeedback, to mention a few. Massage therapy has been crucial in counteracting the imbalanced way I often use my body—a result of the pain's effect on my coordination. Biofeedback and meditation taught me some relaxation techniques that I still use. The problem is that as soon as I stop the technique, the pain starts where it left off. And although having my body in a quiet, relaxed state is always good for the pain, it means I'm not doing anything else.

I do volunteer work at the Chicago Architecture Foundation, where the staff have been willing to accommodate my unreliability and give me work over and above stuffing envelopes (although stuffing envelopes would have been fine with me). Slowly over time, we found ways to work around my various problems, and I am now a useful member of the foundation. I know that at least two days a week I need to be somewhere—they're depending on me.

When the Dilaudid works I can act like a regular member of society—almost. I go to plays, movies, or concerts and go out to dinner with friends. But there's another problem. No matter how hard I try, the pain comes up as a topic in every conversation. In addition to taking over my life, my pain impinges on even my closest friendships. People justifiably become tired of the problem and tired of being with me—or at least that's what I'm afraid they will do. I've always said that I didn't want the pain to define me, but after 19 years I'm on the verge of having that happen.

I'm angry. I'm angry because everything I do is so complicated. I'm angry because good days suddenly turn bad as the unpredictability of the pain complicates my plans. Despite this justifiable anger, my life has balance. My calendar lists activities that I assume I am going to be able to participate in. Some of these get canceled, and I hate this loss of control. My bouts of depression get in the way, but they don't ever totally stop me.

I am one of those lucky people who have good doctors, access to whatever new medication may help, and the wherewithal to do things. I see every hour of every day as a challenge. I traded my car for a minivan that will accommodate my battery-operated scooter so that I have the freedom to go out and participate in activities that would otherwise be impossible. I try not to give in to the pain and suffering, but it's a fear I can't keep at bay.

I feel a responsibility to advocate for the more than 50 million Americans who live with chronic pain. Can I make you understand how difficult the problem is for us? Can I convey the fear we live in? Can you understand that although I'm angry about the way I have to live my life, I still do it, even though the thought of ending it is something I carry with me as a constant companion? Can you comprehend that one of the problems with chronic pain is not being able to measure, or see, or feel, or quantify it? Can I get you to really understand what it means to suffer from a truly invisible handicap?

Ms. Reiter lives in Chicago. She can be contacted at ezreiter@rcn.com. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.

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