Chronic pain can happen to anyone and take many forms. Not all of them are visible, or even recognizable, to the outside observer. Those who suffer from painful ailments often do so in silence. This can get complicated when sufferers of chronic pain, especially those that are young and assumed to be in completely good health, are told that they “don’t look disabled.”
Perhaps it’s a woman in her twenties experiencing the debilitating pain of fibromyalgia who pushes through her discomfort to keep the appearance of wellness at her highly competitive office job. Or a combat veteran with jaw pain due to chronic grinding of the teeth (bruxism) brought on by PTSD who is in need of temporomandibular joint injections for pain management.
Non-visible pain is also widespread among those managing an auto-immune disease such as lupus and Type-1 diabetes. There are any number of pain conditions that aren’t apparent to the naked eye, but the pain is legitimate, and those working through such hardship should have access to disability resources and services unimpeded.
Sufferers of non-visible chronic pain conditions are frequently met with harassment and shaming. Wayne Connell, founder of the Invisible Disabilities Association, started his organization after his wife received a dual diagnosis of Lyme’s disease and multiple sclerosis. He recounts that they would frequently receive dirty looks and verbal assaults while parking even when they had a permit for a parking space reserved for disabled drivers. The stigma encountered by the Connells is shared by millions who cope with invisible disabilities on a day-to-day basis. It creates an additional source of angst for those already dealing with severe pain.
Disability advocate, author, and speaker Tara Moss received a diagnosis of progressive Complex Regional Pain Syndrome (CRPS) in 2016 following a hip injury. CRPS is a neuropathic pain disorder that is lingering pain following a traumatic event or nerve damage that persists after a stroke, surgery, pain, or fracture. Stimuli aggravate the pain, troubling those who cope with it in different degrees of severity. Since the pain ranges in intensity, Moss uses a variety of tools to help support herself from a cane to a wheelchair. When people describe her while in the wheelchair, they often use the word “wheelchair-bound,” which doesn’t reflect her experience at all and is rooted in ableism.
There is a spectrum of visibility when it comes to pain and many conditions come in unpredictable flares or different waves of intensity. Pain can manifest in multiple ways, whether chronic or temporary, visible or invisible, severe or moderate. Awareness of these changes helps those who have pain disorders of all kinds to have access to resources and manage their pain effectively.
Pain management providers who integrate empathy and inclusivity into their daily approach understand that the manifestation of pain takes a variety of forms. Treatment options customized to the unique healthcare needs of the patient will help the patient heal and the world to understand.