Medical misconception

It is funny how most physicians especially those in the ER view people with Sickle Cell Anemia. I once read a few lines in which one physician said that patients with SCA go to the ER just to get a fix. The guy went on to say that the patient came in somewhat in pain, requested painkillers and as soon as he was administered the drug, said he was better and wanted to live. I get angry when I read such remarks. For, it is impossible for one to assess the level of pain that one is feeling, regardless of how clam they may appear. People with SCA anemia particularly are so used to pain that they can withstand an incredible amount of pain without necessarily showing discomfort.

I went to the ER a few weeks ago, I had decided to stop taking Dilaudid to see if I could learn to live with my constant back and shoulder pain and was experiencing withdrawal. Instead of weaning myself, I abruptly stopped thinking I could just do it like I had done in the past after a crisis. However, the discomfort that I began feeling was undescribable. I have had that feeling several times when after a long crisis I decided to stop taking my painkillers as opposed to tappering off like my doctors always advised me. My husband called the hospital to know what we needed to do to ease my discomfort, the person at the end of the line told him to take me to the ER after he had describe my symptoms; shortness of breath, chills, headaches, nausea, restless leg syndrome, and chest pain.

After waiting for almost an hour to be seen, I was finally ushered into a room where I waited for the physician. I was feeling like I had been beaten, my whole body was aching and I was feeling pretty bad. When I told the physician why I was there, he first told me I should not have stopped the Dilaudid without tappering off, nonetheless he told me you don't look like you are in distress, your blood pressure is normal..." All the medical staff that was present there that night kept asking me questions as if they were questioning my own assessment of the discomfort I was feeling. My husband could see that I looked like I usually do when I am in pain, he had told me earlier I looked pretty pale, but somehow, the physician and nurse thought I was not in any kind of discomfort. The nurse added after the doctor on call left "I do not know why you guys came here, this guy is going to make his buck on you" "you should never go without any medicine" "your blood pressure does not indicate you are in any kind of stress, you look like you are rested...." In a copy of my report that I got from the physician on call, he wrote opiate dependency. I was furious when I read the note to me the fact that he did not qualify my problem bothered me deeply, but my husband told me not to worry about it.

In addition, I was furious because anyone who knows me, especially doctors that I have had for years know I have never had any problem getting off painkillers when I did not need them anymore. Furthermore, I am a very controlling person, I can never accept being under the dominion of a foreign substance. Nonetheless, I could not explain it to those accusatory eyes that wrote "opiate dependency" on my report without describing or qualifying the dependency.

The following week. I went back to the hospital and planned out along with my doctor how to tapper off Dilaudid. I have been doing well so far. Sometimes I try to go too fast. She gave me a six week program but I am trying to do it in less than three weeks, it's unrealistic, but I live by faith. God willing, I will do it.

I has not been easy stopping taking Dilaudid because my back pain and shoulder pain are still constant. They are making me miserable, but I feel like taking Dilaudid is just putting a band-aid on a wound. If the Dilaudid is not going to cure my problem, I do not see any use in taking it Even if it gives me instant relief from the pain. I am hoping and praying to get a miraculous healing just like I did with my hips.

There are two kind of opiate dependencies; psychological dependency and physical dependency. Somehow, because I had been taking Dilaudid for a few months, my body built up resistance to the effectiveness of the Dilaudid while at the same time getting used to the drug, that's what they call physical dependency. When SC patients have crisis, they (we) are put on painkillers and when we recover we have to get off the drugs and it is never an easy process. My way of dealing with it had been to just stop taking my medicine without tappering off ( which I do not advice anyone to do) it can be deadly, so have I been told. I am an impatient person, waiting longs days and weeks to get off painkillers to me seem overbearing, I would rather do it in less time regardless of how much discomfort I am in. That's why the medical misconception is that SC patients are addicted to painkilers. I have met so many people addicted to painkillers and none of them has SCA, their addiction is psychological.


That had not been the first night that people did not believe I was in pain because I had not been screaming my lungs out.

I remember when I was in labor with my third child. Because I was still in the middle of a Sickle Cell crisis, my OB/GYN did not want me to forego the epidural, he had told me I needed to get one in order to lower the stress level in my body. Although I was pretty confused about what pain I was feeling (my crisis was not over), I believe I felt the pain of labor. My husband had informed the doctor on call and the nurses about my OB/GYN recommendations, however, when it was time to be administered the epidural, the anesthesiologist kept running to the other women who were also in labor. The anesthesiologist had me wait longer than my doctor wanted me to, the hospital staff kept telling my husband they had to relieve the other women's pain. The woman who had been screaming bloody murder got her epidural before I did, they kept running to all the other screaming women and only got to me when I threatened them. Then I told my husband that I should probably learn to scream and make a scene when I am in pain so that I could readily get the help that I need. The proof is that the only times I had been quickly admitted into a Room at the ER were when I got to the hospital in tears because the pain had become so unbearable I could not be brave anymore.

Because there is such a disconnect between patients with SCA and the medical community, most physicians do not truly understand what we go through. Our bravery or courage is seen as lack of pain.