How vEDS Has Affected Our Relationship – Taya’s Perspective

As you can imagine, finding out Greg has a life-threatening illness and that half of my kids also have it has been a lot to deal with. One of the biggest things it has affected is the relationship between Greg and me. We haven’t been ready to be open about this until now, but since we have been able to resolve a lot of things, we have decided to open up a little. I can’t imagine that what we have gone through is completely unique to us, but I haven’t heard anyone else talk about these things before. Maybe it’s time to let others know they aren’t alone.

Before Our World Turned Upside Down

Greg and me April 19, 2017. This was just a couple days before things changed.

Right before we discovered Greg had severe health challenges, our relationship was better than it had ever been. We were planning to start a new business, Greg was excited about his future in his career, our family was doing well, we were working on improving our mindsets, and our relationship was good. We had never been in a better place before that.

Our family was on a business trip in St. George, and I distinctly remember how great we felt in the photo to the right. We were hiding in the hallway of our hotel room late at night so we could have some ‘alone’ time without waking up the kids.

Different Perspectives

After Greg’s hospitalization, he was very unstable. He had new dissections and other events often, and it seemed like he didn’t have very long to live at all. It was very difficult to process. Our lives had been completely turned upside down, and we were both struggling. Our own perspectives were so different, and that made dealing with everything even more difficult.

In Greg’s perspective, he didn’t have anything to live for anymore. He was going to die, and he didn’t see why his life was worth anything. He wanted to die and get it over with. Greg didn’t feel like he had control of anything in his life, and he felt helpless. He spiraled into a deep depression that was all-consuming. I will leave it at that because I’m sure he will have more to say about his perspective in a future post.

In my perspective, I was going to be left alone to deal with it all by myself. I would be left alone with 6 young kids to raise. Not only that, but Greg was also leaving me with the reality that some of my kids also have vEDS. This was all incredibly sad to think about, and there was a lot of sadness. So much sadness. But another big emotion that I have had toward Greg is anger. Before I go into more detail, I will say that I always knew that these feelings weren’t rational, but that does not make them any less real.


I was so very angry with Greg for doing this to me and to my family. I was mad that he wanted to die, that he wanted to leave me in such a difficult situation. It felt like he WANTED to leave me. His feelings about wanting to die had nothing to do with me, but it still felt like he was abandoning me.

I was angry with him that he passed this terrible thing onto my kids. I was mad that he didn’t care that he gave it to the kids. Of course he cared, but he was much slower at processing this than I was, and dealt with his emotions about the kids later than I did.

I was mad that he got the ‘easy’ part of dying, and that I would be left to pick up the pieces and have much heartache and sadness in the future. He was in such a dark place, and I found myself managing so many things myself. I couldn’t fall apart because I had to be the ‘strong’ one. If I fell apart, what would happen to everyone? I was angry that I had to be strong.

We Were Trying to Protect Ourselves

Our brain’s main purpose is to keep us safe, and subconsciously, being angry with Greg was safer than dealing with the real emotions about the reality that we would eventually be separated. It was safer to keep my distance from him and to see him as the enemy. Because that would mean it would hurt less when he dies. Right??? Anger was protecting me from the real scary emotions.

The truth is that anger wouldn’t change how much it hurt. I would only have regrets that I didn’t cherish my time with Greg. I would deal with guilt for being angry with him for leaving me. I didn’t want to be mad at him. But it took a long time to get past this all-consuming anger and let myself deal with my reality and feel the emotions that come with it.

Greg also dealt with things by separating from me emotionally. For a couple years, we simply lived with each other. Greg was lost in his darkness, and I was lost in mine. Letting ourselves get too close to each other felt unsafe. Greg and I have both had to do our own work to be in a better place in our relationship.

It’s OK To Be Angry

I think that when we are going through something hard, it is important to remember that having negative emotions is OK and even good. Anger is an emotion that is easy to feel shame for. I know I have felt shame for being angry with Greg. But in the end, it was important for me to deal with my anger and see its purpose so I could get to the real emotions. Anger is a secondary emotion, which means there are bigger emotions behind it. It is important to acknowledge it so you can get to the other emotions.

It was important for me to be open with Greg about how I was feeling, and for him to be open with me about how he was feeling. And it was important for us to try to put ourselves in each other’s shoes and see things from a different perspective.

I’m grateful we have had the time to get to this point. The thought of Greg passing away still feels very sad to me, and I know I can’t begin to deal with it before it happens. After almost 3 years, the fact that our lives can be different any day is just a part of our everyday life. The fact that I could be widowed any day is just part of life. I am not angry with Greg anymore, and I’m so grateful that we have been able to get to the point in our relationship where we can focus on our relationship and not let our brains and emotions get in the way.

Leave a Reply

Your email address will not be published. Required fields are marked *

%d bloggers like this: