In conscious living, people work to move away from society’s penchant for competition and towards a more collaborative paradigm. One envisions the world as a place with enough necessities for all and all people being equal…in this model one tends to stop comparing, and striving to be more than, and/or feeling jealousy toward, others. This is the spiritual context in which I live (most days).
In such a paradigm, no life is more important or valued than another, empathy is vetted out equally to people we like and don’t like, and all tragedy is acknowledged whether the recipient is perceived as “good” or “evil.” Living like this leads to more contentment as you walk away from the fear of not being or having enough, toward an understanding that loving your neighbor brings more happiness than competing with them. I’ve noticed I feel increasingly uncomfortable with society’s phenomenon of comparing of diseases in an attempt to establish a hierarchy based on how “bad” or “important” a disease is.
As a person with Juvenile-onset Dermatomyositis, a rare and difficult-to-treat autoimmune disease attacking the muscles and skin, (and a multitude of other comorbid conditions), I have had more than my fair share of hard times. I’ve been sick since I was nineteen, and even though I have made peace with my health, I often mourn the life I could have had. My entire adulthood has been stolen, altered by the course of the diseases. I have never been a normal wife or a carefree mom. I lost multiple pregnancies, as well as the ability to work, run, climb, hike, or even sit on the floor to play with my daughter. I feel sadness when I miss out on an opportunity to be with my family because we know I can’t handle the activity.
Like many other diseases, mine is potentially fatal, reiterated by the recent deaths within my support group; and every time I think I have it licked, it comes back full force to remind me it is the boss. I am in just such a flare, right now; after a couple of years of relative health, Dermatomyositis reared its ugly head again. It is relentless and non-caring in its effects on my life and every time it reemerges, to debilitate me, I worry about the future.
Imagine my surprise when I recently met some people with another autoimmune disease - which has adult onset - and a number of them immediately said, “You are lucky that you have your form instead of mine!” Most autoimmune diseases cause detrimental changes in our bodies. All are debilitating in their own way, and people who have one of these diseases will likely see their physical life fundamentally changed – even if they achieve full remission (whatever that means). Staying healthy, after the emergence of an autoimmune disease is a constant thought in your head.
As patients of orphan or rare diseases, it would seem that we would have empathy for each other and rally together to push the medical field to find a cure. But, instead of constant camaraderie I have found competition creeping into even these closely similar ranks. Yes, I can still walk, albeit belabored and now with the occasional use of a cane. But I wouldn’t call being sick for 20 years “lucky” by any stretch, and while I may not look as severe as others, I could have said, “You are lucky you lived a full and complete life before getting sick.” But I didn’t because I understand that being sick sucks, no matter when and how you get it.
Infighting about who has it worse is one thing, but within society at large, the problem worsens. Hysteria ensues when viral or bacterial infections spread, as scientists rush to release drugs to eradicate them. Neuromuscular research has come a long way, but still has so much more to do. Heart Disease gets much needed research and attention and has made great strides, with room for more. Cancer research and fundraising has long been the favorite cause of the aggregate.
Cancer is considered the disease you don’t want to get - don’t get me wrong, I don’t take it lightly and certainly do not want it added to my list! But autoimmune disease is devastating in its own way and shouldn’t be minimized either. As I get to know other people with autoimmune disease, I really think the unilateral concentration on Cancer by our society as the only travesty is unevenly applied. It does a gross disservice to the 50 million Americans with autoimmune disease, not to mention those with 100s of other life-altering diseases.
Autoimmune diseases can be fatal and many patients have difficulty achieving long-term, ongoing remission. These diseases alter every aspect of life, and like cancer, the treatments for autoimmune diseases cause additional, often extremely serious, health problems. It is controversial to draw parallels between cancer and any other disease and I am certainly not trying to minimize the devastation that cancer causes. It is worth noting, however, that when someone has cancer, everyone in his or her life understands the devastation. When someone has autoimmune disease, everyone thinks he or she should be able to go on to lead a normal life - even though it is nearly impossible despite how healthy they look. Additionally, due to the long history of a collective urgency to “fight cancer” many effective treatments have been developed to the wonderful result that survival rates are at an all-time high. Imagine if we levied the same kind of resources at all of the devastating diseases.
Don’t tell me there isn’t enough money to go around. If we made it a priority, we could find safe and effective treatments for all illnesses. In fact, there are some treatments that are universally effective but they are either highly expensive or too controversial to study. Even when treatments are widely known to be effective against certain diseases the insurance companies fight paying for them if the disease-drug correlation hasn’t been “scientifically proven.” It’s clear that sickness is big money, curing people is not.
Until we find those cures, though, I wish we would cooperate and work toward understanding. Patients should demand to be taken seriously. Separating and pitting disease classes against each other, by making people with one disease feel less important than others, doesn’t accomplish anything. It only marginalizes those who really need help. In the alternative, creating a sense of community among all people fighting diseases will help all patients feel supported and, through the increased cooperation and research, possibly lead to effective treatments.
I wish that all diseases were cured. I wish all people who are struggling with illness could feel the love and care of society. I wish all people, whether their diseases were visible or not, could enjoy empathy, compassion, and understanding. And finally, I wish we, as the patients, would stop judging each other as more or less sick than ourselves and see that a life riddled with illness, any illness, isn’t easy for anyone.