Why My Chronic Illness Needs an 'Emotional Pain Plan'

Dealing with a chronic illness, there are certain things I have just gotten used to. I have gotten used to explaining what my illness is to inquiring minds. I have gotten used to carrying around big bags/pocketbooks in order to travel with all my medication. I have gotten used to performing the mental checklist before leaving the house to confirm I have all I need to be prepared for every possible contingency. I have even gotten used to the pain, learning how to persevere through it to carry out some semblance of “normality.”

During my first hospitalization due to a pain crisis, a friend of mine who also had sickle cell told me I had to make a decision to either let sickle cell control me or I control the sickle cell. So, at a young age I made the decision not to let sickle cell control me, and that meant I had to learn to embrace the pain. Some days are harder than others, some days it’s not possible to function, but every day with God’s grace, I wake up with the resolve to push through it. Medication helps, other remedies help, but overall; I’ve gotten used to the pain.

However, there are certain aspects of this disease I will never get used to. One of the main things being the emotional toll that accompanies being chronically ill. I will never get used to the look pharmacists give me when I go to fill a script and they see the dosages on my meds. I will never get used to the sting of being called a “junkie.” I will never get used to the cloud of suspicion that follows me to emergency rooms and doctor’s offices that leads medical professionals to view me as a drug seeker rather than a patient in pain. I will never get used to the guilt I feel when my family members have to sacrifice to take care of me. I will never get used to the shame I feel when a doctor accuses me of overtaking medication. I will never get used to the disappointment I feel when I have to cancel plans because I’m not feeling up to going out. I will never get used to the sadness I feel when I grieve the life I could have had if I didn’t have this disease. Regardless of if I’m used to the pain or not, what is constant is the fact that in some way, shape or form, I will experience pain in some way, shape or form.

This year, I’ve experienced some heavy blows — personal, physical and in business. This has led me on a journey to think about this idea of an “emotional pain plan.” When I’m in physical pain, I have a “pain plan” or plan of action. This includes what medication to take and when, where to go should I need extra help and who to call. What dawned on me is I don’t have a pain plan for my emotions and that’s a problem. Both pains, physical and emotional are invisible; however, when they’re left unchecked, they can be seen by all who choose to truly take a look. But you have to be willing to actually look in order to ease the pain. Emotional pain should be treated just like physical pain is. My emotions do have an effect on my physical health, so in order to stay healthy, both the mind and body must be tended to.

When we think of pain, we often think of the physical. However, emotions can be just as painful as what we experience in the body. Sometimes worse. But because the bulk of the attention is paid to the physical, the emotional often gets avoided or ignored altogether, causing another a list of problems. Pain is subjective. It manifests differently in everybody. My threshold for physical pain is probably drastically higher than the average person’s because I am in pain every day and have been for as long as I can remember. I can function at a physical pain level up to an eight. But if I’m honest with myself, my threshold for emotional pain is only a three, anything higher than that and you should probably stay clear of me.

So what should I do when I experience a four or higher? Where do I go? Who do I talk to? My goal is to establish an answer to each of these questions before the end of this year so I can go into 2020 knowing there is a plan to take care of the two pains. I have already started thinking about the answers to some of these and I’m OK with the plan changing as frequently as it needs to in order for it to stay current and relevant. I’m determined to not let the two pains hinder me in 2020.