Importance of Patient Perspectives

Living with a chronic illness comes along with a few facts of life - the first is that our experience of our illness is a deeply personal one. The second is that our experience of our illness is not personal at all - because we are one of an indeterminate number of people that suffer from the very same thing!

The second fact means that it is possible for us to find a community of people that can relate to the struggles that we face as chronically ill people. It also means that I feel a sense of obligation towards these people - a desire to help others on the slippery slope that is living with a chronic condition. When we help some of us, we help all of us.

There are a variety of ways that people can give back to their communities, if able. Some of these include participating in patient-focused research opportunities, spreading information about your condition on social media or in private, and even simply advocating for yourself in medical and personal settings especially when it comes to your needs as a person living with a chronic illness.

Patient-focused research opportunities

There are sometimes opportunities for patients to participate in ongoing research relating to their chronic illness. When patient perspectives are included in research, it can shed a bright light on the condition and its effects and causes.

For example, recently The New Yorker published an article interviewing a neuroscientist that conducted studies on sleep. These studies were conducted on mice, and showed that twitches seen during sleep are due to activity in the brain stem rather than the brain cortex. The cortex is where consciousness resides, whereas the brain stem is where subconscious bodily functions reside.¹

The study concludes that the twitches and rapid eye movement seen during REM sleep are not due to acting out dreams, as researchers have previously assumed. Instead, the twitches and eye movement seen during sleep are neurological reflexes, like when you get the hiccups or when your knee responds to a tap by reflexively kicking.¹

As a person with narcolepsy, I could have told researchers this! I experience rapid eye movement and twitching when in between sleep and awake. I am not “looking” at my dreams or “acting” my dreams out when these things occur.
Subtle observations such as these can be very informative for researchers, if they ask the right questions and value the patient’s perspective.

Patient Advocacy on social media and everyday life

When we share our perspectives on our illness, and the various ways in which we have to conduct ourselves in order to live in our society as chronically ill people, we expose others to different perspectives and ways of living. A little can go a long way.

Although strangers aren’t always receptive to the struggles of other people, especially struggles that they cannot relate to, some people will be receptive and may use the information we spread to make life easier for people in their own personal circles that suffer with similar issues.

Patient perspectives are important for a number of reasons, including research and general awareness. Simply living with chronic illness is hard enough - advocating on top of that is a lot to handle! Thankfully, a little goes a long way.