When Getting Used to Chronic Pain Becomes a Problem
I have a difficult time knowing when I’m not feeling well apart from when I have a severe illness. That sounds ridiculous, right? Because I have a chronic condition, someone might think I would know when I feel sick. But the irony is that a chronic condition can result in my being less aware.
A vaso-occlusive crisis is one of the main symptoms of sickle cell disease. It causes acute pain, and I am able to easily recognize when it is happening. Sometimes a crisis can cause long-term damage to the bones, which can result in chronic pain that sticks around for more than six months.
Because it lasts so long, chronic pain is sometimes easy to ignore and to not take seriously. You just get used to it and learn to live with it. And when a new pain occurs that isn’t as severe as acute crisis pain, it’s easy to dismiss it as just another type of chronic pain. This has happened to me.
About two years ago, I woke up with a slight pain in my chest. Because it didn’t feel as bad as acute crisis pain, I didn’t think it was worth a trip to the hospital, and I went to work. It must have been evident to my colleagues that I was in pain because they asked if I was feeling OK. I told them I just felt a little rough.
At lunchtime, I went out with a colleague who called an ambulance against my wishes when she learned that the pain was in my chest. I told the ambulance crew I was OK and didn’t need to go to the hospital. But the results from the tests they ran — blood pressure, blood sugar, and electrocardiogram — were all over the place, and they advised me to go to the hospital. Fast-forward a few hours, and I learned I had a pulmonary embolism. Thank goodness my colleague had not listened to me!
Chronic pain can elevate pain tolerance levels, making it easy to disregard pain that isn’t severe crisis pain. I am trying to learn not to do this. I now regard all chest pain as an emergency, and I’m learning to pay closer attention to new pain in other parts of my body.
Living with chronic pain also causes me to downplay when I experience fatigue, which is another symptom of sickle cell disease. I find it so hard to take sick days at work when I’m experiencing fatigue because I feel bad doing so.
I have taken a lot of time off work because of hospitalizations. I also take time off every six weeks for transfusions. So, I tend to think that if I’m not in the hospital, I should be at work. Which, of course, is ridiculous, but I really do struggle to pay attention to how I am feeling and to know what I need to do. For example, I called in sick on Monday because I felt terrible, but I went to work on Tuesday even though I was still feeling ill and was vomiting.
In that instance, my manager forced me to go home, but I shouldn’t have to be forced. I should be able to recognize when I’m unwell and take time off work without feeling guilty.
Where does this guilt come from? I don’t know. I wonder if this is something other people with sickle cell disease or other chronic conditions experience, too?
Do you have suggestions about how I can address this problem? If so, please share in the comments below.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.