There is no cure: The worst words to hear and believe
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 and why I chose it as an example because dystonia is incredibly rare in comparison.
Yes, there are surgeries that are highly successful for the most severe acid reflux patients and lifestyle changes for others that can eliminate symptoms, but not all surgeries are successful and not everyone can find the appropriate lifestyle changes, so it also has no cure. It would be akin to saying that Deep Brain Stimulation (DBS) or Botox for dystonia is a cure for those who get full symptom relief. But that doesn’t mean that it is a cure for everyone. Some people have been known to get worse with these approaches. This is the point of bringing up acid reflux because there is no cure-all for everyone with reflux just like there is no cure-all for dystonia.
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.
Tom Seaman has lived with dystonia since 2001 and devotes his life to worldwide education and awareness for this life changing disorder. He is the author of 2 books: Diagnosis Dystonia: Navigating the Journey, and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges, as well as hundreds of articles on dystonia, pain, and emotional health topics. Tom is a Certified Professional Life Coach in the area of health and wellness, working directly with people to help them manage their physical, emotional, social, and vocational challenges. He is also a motivational speaker and chronic pain and dystonia awareness advocate. Tom is also a volunteer writer for Chronic Illness Bloggers Network, The Mighty, and Patient Worthy. To learn more about Tom, get a copy of his books, or schedule a free life coaching consult, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Thanks Tom. A very enlightening, thought-provoking and possibly outlook-changing perspective. It aligns with shifts in my emotional outlook which makes your comments doubly helpful.
Thank you Sue. I am really glad to hear that this resonated with you. Thanks very much for your feedback!
Thank you for this! I am newly diagnosed with dystonia in both feet, lower legs and left hand. Living with chronic illness became a reality for me after surviving a West Nile Virus infection in 2003. Since that infection I have experienced a cascade of various “incurable” diseases; however, I refuse to believe that and continue to learn as much as I can about each condition and challenge myself to push through. This month I will turn 70 years young and through the good and the not so good I plan (Lord willing!) to keep as active as possible for as long as possible. I am so glad I came across you on YouTube and have ordered your book on Dystonia to help me on this journey. Currently I am seeing a movement neurologist who is administering Botox treatments in my feet & legs which has helped. Looking forward to learning more! Thank you
I am really sorry about the series of events beginning with West Nile Virus leading up to dystonia. That goes to show how anything can possibly be a cause for dystonia. I have heard so many different potential causes. I am very very happy that Botox is helping. That’s a treatment that didn’t do much for me unfortunately and I am always glad to hear it does for others! Happy early Birthday! Mine is this month also 🙂
Thank you Tom – this is a helpful and positive perspective as always.
I am glad to hear that. Thank you!
Hi Tom,thank you so much for your words and positivity.I was diagnosed with cervical dystonia 12 years ago and like so many of you have struggled daily with everything that this disease throws at you.Yesterday my sister in law was Diagnosed with mnd,that was a serious wake up call for me,how lucky am I to only have dystonia.Take care .
Hi Michelle. I am very sorry you have struggled so long and now your sister with a progressive condition 🙁 I am so sorry. Sending you both and your whole family my very best wishes!
Your thought process certainly has my support. I have always had this condition, though undiagnosed and unbelieved for a very long time. I don’t even operate in the mindset of whether there is a cure or not. I just deal with issues that come up when they come up. I am just glad to have a diagnosis so that I can be a part of a community that has similar issues. Prior to diagnosis I was basically fighting ghosts which is as ineffective as it is futile and giving the wrong explanation to people about why I am the way I am, which they didn’t truly believe any more than I did. Cure or not, doesn’t change my day to day!
Thank you Carol. I am sorry you were undiagnosed for so long. We need to be doing more awareness to get people an earlier diagnosis. Mine didn’t take neara as long as yours, but the number of doctors i saw (some of whom made it worse) was a nightmare. You and I are very similar how we deal with issues as they arise, and do the best we can from day to day, with the hope for better treatments and maybe a cure. As I mentioned in the blog, I think it is detrimental to put all of our eggs in that basket at let it bring us down.
Thank you and Happy New Year to you Tom.
You have been a source of encouragement for over 12 years for me. I have given your book to a few my health care providers and I recommend it to others.
I turned 66 this last year and I am still doing the things I thought Dystonia would rob me of. I wont give up and I wont give in. My life’s journey is more important to me than the Dystonia Dragon that’s hanging out with me.. I’m learning each day about taming this Dragon…
Happy New Year Michelle and thanks for all you said and for sharing my book. I hope doctors are reading it so they can learn more about the experts who live with it…us! Good for you for not letting the dragon define your life!!
I totally agree with you!!!
I had Dystonia for 9 years before I knew
what was wrong with my body!
Just to put a name for this condition
felt so good! I was often told that I was putting the symptoms on to gain attention and/or
sympathy! Fast forward to now I’ve learnt how to speak and spread awareness of Dystonia
to health professionals or anyone who approaches me about my condition!!!
After 15 doctors, I felt the same as you about the diagnosis. It was a relief to get a name and some direction versus running around lost. I too was judged by people and have learned to let it go. They can think what they want because nothing I do or say will change the minds of certain people. I am all about self care and like you, spreading awareness!
Tom, thank you for these encouraging words and proper perspective!
Thank you for your feedback Mark!