You, Me and HD

An Interview with Charlie Burke

After unexpectedly being selected, Charlie decided to seize on the opportunity to share insight on what families affected by Huntington’s disease experience. After much anticipation, Charlie’s genetic test came back negative, leaving her still passionate about advocacy, and continuing to use her platform to spread optimism and support within the HD community. Charlie blogged about her experience on her website, You, Me and HD and invited others to share their story. She then expanded her platform to social media, where she posts encouraging content on mental health, HD advocacy, and her own personal experiences.

What was the history of Huntington’s disease in your family?
My nan was going through symptoms of dementia. When she went into a normal doctor’s appointment, there happened to be another doctor there who specialized in Huntington’s disease. Had that doctor not been in there, we still wouldn’t have known to this day. So, it’s quite random, really, how we’ve kind of fallen into the community.

In 2019, three months after I gave birth to my son, Cian, my dad sat down with me and my siblings. He said, “I’ve got something to tell you. I’m gene positive for Huntington’s disease.” I first thought about my dad, and then I just thought about Cian. I thought, what I’m carrying in my arms right now has a chance of getting juvenile Huntington’s disease. It was a wake-up call: you don’t know what’s going to happen tomorrow, and you just have to live life for today. With motherhood, you’ve got this baby in your tummy for nine months, and that’s the only time that your baby will ever be truly safe, because as soon as they’re out in the real world, anything can happen.

How did your grandmother and your father’s gene positive result for Huntington’s disease affect the family?
It knocked everybody flat. There were times that I was looking at my dad totally differently, trying to find symptoms. I suddenly went from thinking my dad’s going to be here forever, to how much time do we have left with him? In any capacity, that’s incredibly hard… especially when you’ve got such a young baby.

It was really hard on my mom. All of a sudden, you’ve got several people that could be linked by this faulty gene. I just wanted to be there for her. She always said that she counts herself lucky because we’re all adults now. The one thing she worried about was Cian and his chance to grow up and experience life.

There were days I wanted to run away from everything and not face the reality. The previous 18 months were the happiest times. When I met Cian’s dad, Rob, I knew I could turn to him for anything. That was a test in itself because when I met Rob, I didn’t know about the HD gene. He has been such a positive force through this journey.

What led you to create You, Me and HD?
I had Cian in March, my dad told us in June, and it wasn’t until November that I thought, “There’s not much positivity out there, in terms of the disease and awareness.” I was really struggling with people at work understanding what I was going through.

There were some incredibly dark days thinking, I’ve got to look after this baby, but this baby could quite easily be taken away from me in a few years’ time. It really did affect the way that I let myself love Cian. I mean, the moment that boy was put into my arms, I was hooked. It was just that battle every single day of looking at him and thinking, “Am I going to keep living my life, focusing on every single milestone that he reaches and thinking, he’s just begun to walk… is there going to be a day that he stops walking? Is there going to be a day where I’m no longer caring for him? Will he potentially care for me?”

That’s when I decided to set up You, Me and HD. I wanted to find someone who had been exactly in the same position as me with this rare disease. In the beginning, there was a lot of getting to know people and asking questions. That led to this advocacy, and I suddenly felt like I was part of this massive family.

I started speaking to Ashley, who runs the lifestyle blog, I’m Not Drunk. I suddenly felt like there were people I could really talk to and understand. I spent a year telling my own story through my blog. Then, I started speaking to other people and got them to share their stories. I think that’s really how the page grew, which set up this community. Posting daily or weekly reminders that you could be going through a rough time, but we’re still here. Trying to find that brightness in a really dark place for people is what I think is really, really important with HD.

Originally, you did not want to have the genetic test done. What led you to change your mind?
I never would’ve gotten tested if it weren’t for Cian. We just started our family, and we kept asking ourselves, “Would it be fair to decide to have another baby knowing it was at risk?” I applaud anybody who makes any kind of decision, whether they decide to have children or not. I will never be that first person in line to judge somebody on what they choose to do. Until you go through it, you can’t judge anybody.

By knowing the outcome of the genetic test, we could make the financial decision for embryo selection. If I tested negative, we wouldn’t have to go down that route. I was so angry when I found out we wouldn’t get funding because we couldn’t confirm Cian wasn’t at risk. It was like, “Well, what do you expect me to do? I’ve got to wait until my son’s 18 to find out whether or not he has a certain strand in his DNA? How’s that fair?

I’m the one who made him. Out of everybody in the whole wide world that should know exactly what’s going on in my son’s body, it should be me.” I kept fighting that for ages. We just knew the only way we were ever potentially going to know about Cian was if I put myself out there.

What was your experience with the genetic testing process?
About a year after I set up the blog, I found a Facebook post about the BBC News looking for someone who was at risk for Huntington’s disease but hadn’t been tested. If there was anybody else out there who went through the last 12 months that I had just been through… if I could be that person for them, then I thought, I’ll go through it.

We didn’t think we’d be the family they would pick. They filmed the whole journey from start to finish, from the moment we decided to go into the counseling room, to the moment we after we found out the result. They kept saying to me throughout, “If it comes back positive, you don’t have to be filmed.” Right from the very beginning, I said, regardless of what that result is, I want you to film every single moment that you can. This disease makes you reevaluate so many things, but importantly, trying to get other people to understand it is incredibly hard.

What advice would you give to someone who was on the fence on whether or not have a genetic test?
You’ve got to make sure that decision is for you. Don’t let anyone’s opinion affect what you ultimately decide to do. I know a lot of people who are at risk in their early twenties that get told, “I don’t think right now is the time for you to know.” They get incredibly angry about that. There is such a high suicide rate when it comes to people finding out. You can quite easily take that news and see your future in a totally different light. My dad found out later in his life and he’s still not symptomatic. My nan didn’t start presenting symptoms until she was 80.

Have the confidence to know that you can own it, whatever happens. You are more than a faulty gene. Do not let that tiny strand define everything about you. You are still the same person you were before you walked in, and you will be that person afterwards. As much as you can easily look at it as a life sentence, it’s not. My mom used to say to me, “You could find out that you’ve got Huntington’s disease today, but you could get hit by a bus tomorrow. So, in those last 24 hours, you’re going to sit there thinking all these, what if’s and not truly living.”

How did you feel after testing negative for the Huntington’s disease gene? How did your negative result affect your advocacy work?
We had Cian in the room when they gave us the result, and it was just so raw… to have gone through that as a family and just know that whatever happened, we’d have each other. There’s a few seconds where you have this massive relief, this huge weight off your shoulders, and then suddenly that survivor’s guilt eats at you. It is the most horrible thing because before you walked in that room, you were able to identify with everybody. Then, you are on one side.

It closes you off. Not just online, but with family. Do you suddenly not talk to that family member who’s at risk because are they going to look at you differently? Before being tested, I was in a really, really dark place in terms of how I was going to deal with the repercussions of being tested. But coming out of it, one of the first things my dad said to me was, “You’ve got to be happy now.” I always took comfort in knowing that if something happened with my dad or my brothers, my mom wouldn’t be alone in caring for them. That was a big thing for me.

How did your negative result affect your advocacy work?
Now, it’s just advocating in a way that you’re still taking care of everybody. You are obviously still raising awareness for those that don’t get the negative outcome. They go on to be symptomatic. You’re still fighting in that corner, opening up that conversation about mental health and caring for everybody.

There’s been a big shift in the community recently. You almost feel like you are the people left behind. Because, let’s be honest, when someone does have Huntington’s disease, they are the person all your focus and energy goes to. It’s easy to forget or judge the other person because they’re not going through it. We’re quite lucky that my dad’s not symptomatic. At the same time, I’ve seen my nan change quite a bit from three years ago to where she is now.

I know that it’s especially hard for people that do lose their loved ones to HD. They think they can no longer be a part of this community because the person isn’t here, or due to a negative test result. For me, it’s practicing every day to still be able to make a difference. There’s still something to be gained from this experience.

What has the writing process for Erin Patterson’s next book, Huntington’s Disease Heroes, been like for you?
What’s really lovely is that every author comes in from a different angle. This book has the potential to literally be a Huntington’s Bible. It caters to everybody from each stage of their lives throughout the disease. You’ve got people who are writing that have juvenile Huntington’s disease and people who are considering starting a family. There’s another author who’s writing about their caring role with their father.

My angle is more from that maternal bit. A lot of the time, you’ll hear about people deciding whether or not to have children. Whereas you never really hear that side of, right, I’ve already got a kid and I can’t change the outcome of whatever happens. I’ve got to just roll with it. My story has changed so much within the last three years. This past year, I’ve suffered a miscarriage. You can be writing about things like “you don’t know what’s around the corner,” but then it becomes very real. Writing has been really therapeutic, but also hard at times… letting yourself go back into the past, relive that, and truly letting yourself come to terms with how low you were.

Since becoming an advocate in the HD community, what are some key takeaways you have learned?
Never compare your situation to someone else’s in the HD community. That’s the first rule in the Huntington’s disease club. Because somebody isn’t symptomatic yet, doesn’t mean that they can’t be involved in a conversation with someone who’s in the later stages with their loved ones. We all have something to learn from each other.

Remaining open to the whole neurological community is important as well. I follow a lot of people that are caring for people with dementia and Alzheimer’s. There’s much to be learned from what they have to go through. It’s very easy in this community to keep to yourself and have those outbursts of saying, “You couldn’t possibly understand, because it’s a rare disease.” Yes, it’s a rare disease. However, the more people that know about it, the more we can learn and potentially cure Huntington’s disease. It’s only when you remind people about that, they’re actually like, “Hang on a minute, these conversations really matter.”

As Cian, grows up, how do you plan on navigating serious conversations with him about Huntington’s disease?
When I started the blog, I found a little comfort writing letters to my loved ones. I never ever wrote a letter to Cian until the day before I found out that I was negative. Instead of writing it down, I decided to film and share it. That was such a key moment in getting people to understand what this whole thing truly means.

I remember saying in the letter, “We might find out tomorrow that Mummy was being absolutely silly, imagining all these things. But we might also realize that this is our lives.”

I promised him that whatever happened, I was never, ever going to wrap him up in cotton wool, that he was going to live and do amazing things, whatever happened.

I was a worrier before HD came into my life. I always second guessed, and had multiple answers to one scenario of, “What could go wrong?” The way I parent Cian now going forward is with the outlook that we are incredibly lucky. We’ve got things in place so that if my dad becomes symptomatic, we can explain what’s happened. Obviously, we’ve got the documentary, and Cian features on it. Cian may grow up, look back, and go, “Do you know what, Mom? Why were you so upset? Why was this such a big thing?”

I want him to actually understand how it could have easily been the other way and why it was such a big thing.
I can’t wait to have that conversation with him. If anything, I think that would just open up his mind to how people’s lives are so different.

What message do you have for the Huntington’s disease community?
When I look back at everything, I just think of it as a beautiful star. I say to so many people, “I’m glad it happened.” That may sound really strange, but for example, I wouldn’t have met my best friend, Ashley. A lot of people believe this whole experience is forever doom and gloom, but there’s so much to be gained from it.

Just remember that life is still for living. You’re still going to do amazing things, and you’re going to meet amazing people who are going have an amazing impact on your life. Remember, you’re never alone. You’ve still got a voice. As much as a disease can be so rare, you’re never, ever going to be on your own with it.

To support the publication of Huntington’s Disease Heroes, visit: https://gofund.me/ec3c481c

To learn more about Charlie Burke’s story and how you can share yours, visit: https://www.youmeandhd.co.uk

Follow Charlie’s Instagram account: @youmeandhd