When I developed a neurological movement disorder called dystonia back in 2001, one of the first things I was told is that there is no cure. This terrified me. No cure?!? How is that possible?!? Of all the things that could happen to me I get something that has no cure!!! And of course whenever I told people what I had, I always said, “and there is no cure!!,” to emphasize even further how horrible it was to have this particular condition.
This victim mentality mindset I had is common for many people with dystonia and many other health conditions, and it leads to a lot of anger, sadness, depression, and stress. It wasn’t until a few years later that I changed my perspective of a cure that I will expand upon below.
Before diving in, I think we should believe there is a cure for everything even when told there isn’t. Maybe there is and we just don’t know it yet. Maybe a remission is possible. It doesn’t hurt to have hope and believe it can happen. Even if it doesn’t happen, believing we can get better isn’t going to hurt us. I also think we need to define what we mean by a cure, because it means different things to different people.
From another perspective, I don’t think many of us realize this but practically nothing has been cured in our lifetimes. ALL diseases and health conditions are only managed. As of 2020, the World Health Organization (WHO) has officially declared the eradication of 2 diseases, only one of which is a human disease:
Smallpox (humans)
Rinderpest (cattle, bison, buffalo, goats, and sheep)
Close to eradication are polio and malaria. When it comes to neurological disorders, there are more than 5,000. NONE have been cured. This said, there are certainly people who have gone into remission and have found very helpful treatments that have reduced or eliminated their symptoms. It doesn’t mean that there is a cure for all and the fact that we keep fighting for a cure with the mindset that it is the only way we can ever live a fulfilling life, is extraordinarily detrimental to our mental well-being.
Things like acid reflux (GERD) don’t have a cure either, but few people are up in arms about it. But I’ll tell you from personal experience, acid reflux is horrible to live with and there are very few things we can do beyond antacids. We actually have more options for symptom management with dystonia and other conditions that are far more rare than acid reflux, which impacts 1 in 5 people.
Granted, acid reflux isn’t usually as life changing as dystonia for most people, although it can get really bad, but the point is that it has no cure and impacts 20% of the population. Celiac disease, diabetes, cancer, or migraines, to name a few, also have no cure. But they all suck, so if we just accept this fact and not be emotionally burdened with the “no cure” mantra, this equates to less stress and the feeling of eternal damnation.
I think it’s wiser to focus LESS angry attention on a cure and focus on living as well as possible with whatever treatments currently exist, while STILL keeping hope alive that a cure will come. The negative stressful emotions attached to this reality are mentally detrimental. If your only hope for a joyful life is if they ever come up with a cure, no offense but good luck. As mentioned, nothing currently has a cure.
Here is a comment someone once made in a dystonia support group to illustrate the depth of suffering that people experience because they have been told that this condition has no cure, which by the way, doctors should NEVER tell us in those words. It is very defeating. They need to find a better way to package this news that is based on optimistic reality and not a dark life sentence.
“Dystonia is an endless disease. There is no cure. Pain and discomfort all day. Unless scientists discover a
cure, dystonia is like living a hell on earth.”
While I completely understand where this person is coming from, how does this perspective help them cope on a daily basis? It doesn’t. It breeds anger, resentment, and bitterness, all of which are emotions that will keep us unwell.
I’m going to flip things around a little bit and say something that you may or may not agree with…I think we should believe that there actually is a cure for everything. It may not come from doctors or researchers or anything like that. It may come from something that we find within us that we change that creates a cascade of events within the body that puts us on a healing course. I have seen it happen with people so maybe there really is a cure. I don’t know but if the body created the problem, can’t the body cure it? It doesn’t hurt to think this way even if it doesn’t happen. Do any of us really know enough to say that this isn’t a possibility? Of course not. None of us knows enough about anything to ever be a cynic.
I know people who have claimed to have been cured. I don’t question them, but I know so many people who argue and debate with these people defending the, “there is no cure,” rhetoric. Why are we stressing over all of this? What’s the point of defending a disease/disorder and then arguing that there is no cure? Why are we so attached to there not being a known cure? There isn’t one for anything. Who cares if someone doesn’t believe in one or does believe in one? Let’s stop arguing about it!!
I promise that if you let go of your hold on the notion of a cure, no cure, or whatever you believe, with such a vice grip, your body is going to be in a much healthier state. Nothing has a cure so please don’t let it discourage you unnecessarily when you are told that dystonia, or anything else, has no cure. Everything is managed and dystonia is one of those many thousands of conditions that fall into this category. It doesn’t need to be a life sentence unless you want to believe it is and support the comments I shared above from the patient on a support group living in constant misery because there is no cure, even though nothing else has one either. Perspective can move mountains if we choose to change ours to one that is more rational and realistic.
