By Victoria Reed, PNN Columnist

Recently I had a conversation with a family member who suffers from chronic pain. He said that he “deserves” the pain, because it resulted from certain actions and choices he made as a young person. He went on to say that my chronic pain isn’t “fair” because I did nothing to cause it.

I was astonished that he would actually feel that way. Does anyone really deserve to live a life with chronic pain? Surely, not!

He’s right in saying that I did not do anything to cause my pain. I just happen to have genetics that contribute to the development of certain illnesses, particularly the autoimmune kind. This runs strongly in my family. My sisters have multiple autoimmune illnesses, including rheumatoid arthritis (RA), lupus, type 1 diabetes and fibromyalgia. My mother suffered from untreated fibromyalgia as well. In addition, my daughter has been diagnosed with fibromyalgia.

Obviously, none of us did anything to cause our illnesses, nor the pain that comes from having them.

While this particular family member may have made some questionable choices as a teen that caused injuries and persistent pain well into adulthood, he doesn’t deserve chronic pain. It’s not uncommon for teen boys to engage in risky behavior, and I’ve told him that his pain is no less important and no more deserved than mine. 

While there can be many, many causes of chronic pain, compassion must be given to each and every patient, regardless of the cause. Life happens! Whether it’s the result of a genetic-based illness, an automobile crash or some other accident or injury, no one deserves to live in pain. Even if the incident that caused your pain was due to your own negligence or carelessness, it is still valid pain, and treatment is as justified as it is for any illness.   

RA Drug Shortage Continues 

On the flip side, I have been experiencing continued difficulty getting my RA medication. Actemra (tocilizumab) is a biologic drug that was created specifically to treat RA, and the IV form has been my mainstay treatment for many years. However, there is still a worldwide shortage of Actemra because it’s been repurposed to treat covid patients. According to a statement by Genentech, the drug’s manufacturer, there will most likely be continued shortages throughout the pandemic.  

At one point during the summer of 2021, Genentech reported a “temporary stockout” of Actemra IV in the U.S. because so much of it was being used for covid patients. During that time, I was forced to switch to a different form of treatment. But even after switching to a subcutaneous self-injection, whenever I attempted to refill my prescription, my pharmacy informed me that the medication is “long-term out of stock.”  

This formulation was not approved by the FDA’s Emergency Use Authorization to treat covid, but it appears that it is indeed being used for that purpose and is frequently unavailable to RA patients. To say that this is frustrating would be an understatement!  

While covid is no doubt a serious illness, untreated RA with its systemic inflammation is also very serious. This runaway inflammation can, and often does, do damage to the heart, lungs and eyes. Untreated and poorly treated RA is also associated with a 10 to 15 year decrease in life expectancy.   

It’s understandable why doctors are currently experimenting with older, established medications to treat covid.  Fortunately, researchers have discovered that some of these older medications have been helpful and do decrease the severity of the virus. However, existing users of any particular medication shouldn’t lose access or have their necessary prescriptions significantly delayed. RA patients are no less important than covid patients.  

Chronic illness is a common problem that affects millions of people worldwide. But depending on where you live and what your condition is, you may not receive the same level of treatment and may not be taken as seriously as you’d like. No longstanding pain should be ignored, as untreated and under-treated pain will undoubtedly lead to other problems, such as depression, anxiety and even suicide. The risk of suicide also increases when patients are forced to taper off of opioids.  

The one thing that we all have in common is that we are human beings, and no matter what the chronic pain condition is, everyone deserves to be treated humanely and compassionately, just as any animal in pain would be. Nobody ever “deserves” to suffer. 

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.