I am quite outspoken. I have no problem voicing my opinion or needs — or so I thought. An exchange this morning left me speechless. While my head was swimming with semi-intelligible responses, I was rendered mute.
Let me just say that I have been on pain medication for a long while. I receive my medications from the same pharmacy and my prescriptions from the same physician. I have never missed or failed a drug test. I also take a multidisciplinary approach to coping with pain. I meditate, pray, stretch, seek counseling when necessary, do physical therapy, and spend time volunteering.
Hence, when static arose around the subject of my medication, I was surprised. The pharmacy told me the only people who should take this quantity were those who have cancer or are in palliative care. I should not need those medications. My mouth opened but no sound emerged. My emotions were on tilt. I was angry.
How could anyone dare suggest my pain was less than someone else’s? Pain does not discriminate. Must I have cancer to justify pain relief? I was sad. How could they take away something that allowed me to live? I was scared. “There goes life as I know it,” I thought. “I am going to suffer.”
I am going to suffer.
Why? Because I do not have cancer nor am I in palliative care, and therefore, my pain is insignificant. While I understand and agree with the use of parameters, this is absurd. How can an arbitrary entity suggest that my pain is not worthy of medication? A one-size-fits-all solution is unrealistic and cruel.
People with secondary progressive multiple sclerosis have pain. Furthermore, my pain began before my MS diagnosis. Spasticity, myofascial pain syndrome, and trigeminal neuralgia are not quantifiable. I do not fit the little box; therefore, I am left to suffer. I cannot think of greater injustice.
Essentially, I am being told that if I were dying, my quality of life would be taken into account. However, if I want to live and thrive, I am on my own. Why? Because I do not have cancer.
I love my life and I love living. I write, volunteer, get out with my friends, and run general errands. I work hard to maintain this lifestyle, since I have pain even with my current regimen, but that is OK. I would be scared if had none. I can still create beautiful possibilities for myself. I have days when I cannot do anything. Yet, there exists a balance.
I have seen how my life would be in the absence of that equilibrium. It is a painful reality: Life as I know it would cease. I have been in this dark place before. I have been the puppet. I have danced like a marionette while an autocratic puppeteer decided my fate.
I am not a puppet. I am a person. And I am in pain.
Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.