The one thing people with chronic pain think but cannot say out loud.

The one thing people with chronic pain think but cannot say out loud.

January 2015, Published in iPain

You have cancer? The world supports you. You are automatically a warrior from day one of your diagnosis. You may get rides to doctor’s appointments, cards and calls and texts, even meals provided to you. You are so brave. You can go on medical leave or take time off without question. There are tons of support groups, scientific funding, supportive websites…

You have chronic pain? You are so fatigued you can barely function and have had severe pain for 13 years? Buck up. Stop being lazy. Work out more. Eat better. Weigh less. Weigh more. Try these oils. Try these vitamins. Don’t take that medication, you druggie. Try harder. Try the obscure remedy my friend’s uncle’s neighbor’s cousin tried. Suck it up. Just think positive. You see too many doctors. You don’t see enough doctors. You don’t need that cane, you’re over-exaggerating. You look fine. You need time off from work or to leave early for doctor’s appointments? Too bad, figure that out on your own time…

I am by no means saying cancer isn’t horrible. I have had close family members, friends, and patients who have had cancer, some have died from cancer. And yes it’s not good to compare medical diagnoses as everything has its own difficulties. However, whether we like it or not chronic pain is always compared to what are deemed to be “bigger” and “scarier” diagnoses. What I am saying is why is it that people with chronic pain do not get supported and recognized in the same way as other illnesses?

Over the years I have supported many patients with cancer. I have had countless of these patients tell me that before cancer, when they had “just” a chronic pain condition, that it was more difficult to deal with. They expressed these very same thoughts about the difficulties of living with chronic pain and they had cancer!  They would say how people were so open to supporting them and trying to understand their medical treatment and well-being when it came to cancer. Chronic pain, not so much.

I have had countless patients with chronic pain tell me with shame and tears in their eyes, “I wish I had cancer instead.” They say this while looking down. I make eye contact and cry with them. “I know.” You are not a bad person for thinking this. It is because with cancer there is hope of a cure or remission. It is because with cancer there is hope for a specific treatment plan and specific protocols. It is because cancer is visible. It is discernible on bloodwork and scans and other medical tests. People believe those who have cancer and they don’t question it. And yes, it goes without say that of course there are exceptions to all of these, as with all medical diagnoses. The point is that there is hope of cancer going away, for there to be an end point, a finish line to cross, an end to harsh medical treatments, a recovery date to celebrate. Chronic pain is, well, chronic. 

I have been fortunate to have a few cherished family members, friends, a very supportive boss, and an understanding medical team, but all around me I see an absence of this. And even with my cherished loved ones, I still sometimes feel alone and isolated due to the pain. We as a society wouldn’t stand for this treatment of people with cancer. Why is it acceptable for those with chronic pain?