Is there a “correct” perspective?

No. 

It’s like asking if there is a correct angle to view an apple at. There might be one or several that the majority of people prefer, but that doesn’t make it “correct”.

With a given set of facts, there is no “correct” story or observation to make.

Within the HD community we see a wide range of opinions from optimistic and hopeful to pessimistic and defeated. Clearly there is some wiggle room here. So no matter what you think now, I am suggesting that we let go of the thought that “I can’t think this certain way because it is wrong to think that”, because we can think whatever we want!

Thoughts cannot be right or wrong, they just are.

Ok, so there is no “right” perspective to have regarding HD, and we can think whatever we want. So how do we change our outlook and how do we know if we should?

Our current beliefs feel TRUE

Sometimes it is really hard to let go of current beliefs. Something I hear clients say a lot when we talk about changing our thoughts on something is “Well I can’t change that thought because it just feels true. How can I start thinking differently if I don’t believe it?” That is totally valid!

Of course it feels true, for a couple of reasons 

1. You’ve been thinking that thought over and over and over, probably for a long time. Beliefs are just thoughts that we think so often that our minds accept them as facts when they are, in fact, still just thoughts‍
2. The eyes see what the mind looks for. Our brains are CONSTANTLY looking for evidence that backs up our current thinking because it knows that CHANGING OUR MIND requires more energy, and whenever possible, the brain avoids spending energy.

So I want to acknowledge that when we challenge some of these beliefs, especially deeply-held and heavy beliefs, like those many of us have around HD, there is absolutely going to be some push-back, or some resistance to those changes. That is completely natural. In fact, we should expect that, and I am here for all of it.

What are your current beliefs creating in your life?

If it is creating good things for you, then great! If it ain’t broke, don’t fix it!

If it is causing you some pain and suffering, though, it might be time to switch it up.

Beliefs filter the evidence

Keeping in mind that our eyes see what our minds look for, one thing that we see beliefs do is that they block us from accepting any evidence that threatens our point of view.

Classic example of watching the basketball team in white pass the ball, and the bear walks through. Our brains skim over it because it isn’t relevant to the task at hand. Our current beliefs are the lenses or filters through which we experience our lives.

I saw recently the comparison of our minds being like a search engine like google or youtube. Whatever we put in the search bar, directly indicates what results we will find. And whatever filter settings or beliefs we have, the results will be filtered accordingly. Sometimes this filtering mechanism is really helpful, like if we have the belief that we are capable, lovable, or naturally happy. Other times these beliefs or filter systems can hurt us.

What are your current beliefs about HD and your experience of it? And are you ok with that being the filter over your life?

Example: 

I hate this disease, this is the worst thing that has ever happened to me, HD ruined my life, HD has killed any hope and joy I could have.

I have no judgment of you if these are thoughts you find yourself thinking. I just want to show you how those thoughts might be hurting you. So if you are thinking that HD is horrible, you might be missing out on any of the ways that HD might not be horrible. If you think that HD ruined your life, your brain will automatically filter out any evidence to the contrary.

And again, I am not here to argue for or against the idea that HD is a terrible disease. You can think whatever you want. I just think it is important to be in the driver's seat of our experience and be aware and intentional about the way we think so that we don’t rob ourselves of potential joy and peace.

If I notice that a particular thought or belief isn’t helping me, some of my favorite questions: How could the opposite be true? What evidence can you find that what you believe right now could be totally or at least partially wrong? Pretend that you were on a debate team and were assigned to debate for the opinion opposite your own current belief. What would you say? What examples would you bring up? What holes could you poke in your opponent's story or claim?

I could be wrong about that is one of the most freeing thoughts

Thought experiment:

I’m going to try a little exercise, It might sound crazy, but just for a minute, set aside what you hold as true and false.

If you could believe whatever you wanted, what would you choose to believe? If none of the circumstances of your life changed, but you could believe whatever you wanted to believe about yourself, your family, your life, your future, your health and wellbeing, etc what would you choose to believe? Knowing that no belief is off the table, whatever you choose is possible and no more or less correct, and knowing that your amazing brain could immediately get to work finding evidence for it, no matter how little. What would you believe?

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If I lost you there, that’s ok, come on back and allow me to explain a couple things that might have been worrying you.

I’m not telling you to just discredit things that the doctor has said, or just to pretend to ignore facts.

Like I said at the beginning, for any given set of facts, there are a thousand stories that can be told.

The Flexibility of Statistics:

Think about the things we usually hear from doctors and scientists. They are all based on statistics (i.e. With such and such number of repeats, you are most likely to develop symptoms between such and such ages).

One thing about statistics is that 100%s are extremely rare. 

So when a doctor says you probably won’t be able to do this, or most likely such and such will happen by this age, etc, those are all statistics that are lower than 100%.

You should absolutely consider those odds when you are making decisions about what to do like housing, job accommodations, end of life planning etc, but when you are making decisions about what to think, why not believe that the doctors are wrong about your situation? What would happen if you decided that you were the one to beat the odds? Someone did, why not you?

Beliefs can shape our present AND future

Present:

Beliefs impact our moods, and our moods affect what we do and how we do it. Think about it.

Have you ever heard the phrase Hurt people hurt people? Like people who feel hurt often turn around and hurt other people. Well it's true. And sad people create sadness. Tired people tire themselves and others out. And stressed people make things stressful.

Oof! How did that sit with you? We know it instinctively, but when it's directed at us, we tend to get defensive. Me too! I bring these things to your awareness because they have been helpful for me to work on, not because I have somehow beat the system. My goal is not to call you out and have you feeling negatively about yourself for feeling negative.

Whatever we have been doing and thinking up to this point is what it is and we can have compassion on our innocently unaware minds for what they did when we were on autopilot. But today is a new day. Let’s evaluate where we are so that we can take our first steps forward.

Future:

The story we tell ourselves about our future directly impacts our future outcomes. What we believe can change the facts of our future as well as how we will feel in our future.

This can happen in a few ways:

1. Gathering evidence: We continually gather supportive evidence, which solidifies our belief, which in turn, drives us to collect even more evidence. A powerful cycle for better or for worse.
2. Target fixation: Have you ever been on a bike and noticed a rock that you don’t want to hit and you keep looking at it and then you hit it? We do this in life. We make true whatever we are focussing on. Someone said “We don’t always look where we are headed, but we ALWAYS head in the direction we are looking” So what does your current belief point you towards? And do you want that to be or become true?
3. Keep us stuck: When we are so convinced that life is going to go one way, when the opportunity arises to change the direction, we tend to give up a lot more quickly and easily. We don’t pursue things or fight for paths that oppose our current view because we have convinced ourselves that they are impossible. We do that to ourselves!

In what ways are you ensuring that your beliefs about HD come true?

But Courtney, I hear you say, Are you telling me that I should think HD is great? How am I supposed to think that dealing with HD is all sunshine, rainbows, and butterflies? And that is a wonderful question that brings me to my final point.

You can believe whatever you WANT

If you believe right now that HD is hard, I hear you and I see you. I understand that you have a lot of reasons and evidence that support that belief and I am not here to take that away from you. I also understand that those kinds of thoughts can create very real, very painful feelings. And that is all OK.

Sometimes we WANT to feel badly about a situation.

If my cat gets run over, I am not going to choose to be happy about it just because I know that I can. In that situation, I would want to feel sad, hurt, and maybe even angry. But knowing, even during those tough feelings, that I can leave all of that behind whenever I am ready gives me so much peace and empowerment.

I am not encouraging everyone listening to start singing from the rooftops about how amazing HD is. I just think it is good to check in with ourselves every once in a while to make sure we aren’t adding any unnecessary pain to our situations.

So maybe if you think HD is an extremely bad thing, you can try on the idea that maybe it is only a really bad thing and see how that changes your life. You might stay at believing it is really bad your whole life and that is 100% ok. Or maybe one day you’ll decide to think that it is a mostly bad thing, or a sort of bad thing.

I can promise that if you loosen your grip on some of these negative beliefs about HD and about your life, you will immediately start seeing results in your life and never want to turn back.

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Wow that felt like a lot!

How are we all feeling? Light bulb? Brain tired? Totally disagree? I want to hear it.

It was a long one, but it was packed with some really good stuff. I wanted to make  sure that I gave you some really foundational ideas right off the bat and then we can dive in deeper on specific parts of it later.

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