August 11, 2020
By Robert Butler
Mental Health is something I am sure that many of my Hemophilia brothers and sisters battle with every day. While what I can share may resonate with many, my hope is to shed some light on the depths of my struggles. And through this journey I can hopefully pave the way for understanding for both treating the mental health of hemophilia and help others who may be a little more afraid to come forward and talk about their struggles.
When we think about mental health, we think about how we are in this moment, this day. What are we dealing with recently? However, when I think about mental health, I wonder where it may have started. Where did it begin? I go back to my childhood. I think about all the children with hemophilia and what all we have to battle. One of the biggest struggles as a child with hemophilia is you have to endure some pretty difficult times like your first bleed. Some bleeds are easy-going where you treat it and deal with it. You learn how to infuse a Factor 8 shot with a needle. On the contrary, there are nights where a bleed can wake you up out of a deep sleep or a bleed will occur very fast and you won’t have time to stop it before it reaches its peak. Those are the times a child has to endure some very difficult emotions like how to cope with the pain. How to endure the pain because you can’t escape it. You are literally trapped. I think it is during those moments as a child that you realize what’s coming your way in relation to the pain due to the repetitive nature of your bleeds. You start to harden emotionally on how to battle the pain. You know there is not a whole lot of anything else around you that can help. You receive the sympathy of your parents and/or anyone else who will listen or may witness your pain. But, it’s really a personal battle so you begin to harden. You begin to build a wall and find ways to block the pain. I can’t help but wonder if during your childhood, at an age when you really shouldn’t be facing such tough situations, where you are learning to endure some very difficult times, you harden your emotions and your tolerance weakens. Is this when your mental unhealthiness begins? Is it when it starts to bleed into other aspects of your life?
Thinking back to some more childhood memories, I remember waking up out of a dead sleep due to bleeds. My parents would be asleep as it is the middle of the night. For some reason, I would not always wake them up. I don’t know why to be honest. Maybe I didn’t want the attention or I didn’t want to wake them up? I didn’t want to upset them although I don’t know why I thought it would upset them. Mind you, it’s the middle of the night so what’s a kid to do? I just knew I had to do something. I had learned early on that you do not treat a bleed with heat but it was one of the fastest ways to kill the pain. As a 10-year-old kid dealing with things like that, you’ve already considered your options even the desperate ones. I would literally go into the bathroom, fill the sink up with blazing hot water and dip my elbow into the water. It would kill the pain so abruptly, so instantly that it would cause a giggle under my breath. That’s how intense and comforting it was. But looking back, I have to question “How at an early age I was already learning to disobey or ignore the soundest advice on how to take care of myself just to ease the pain?” Some people might say anyone would do whatever that had to do to control or stop the pain. I wonder though if that had anything to do with how I deal with my Hemophilia today? I will do whatever it takes now. I don’t care if a doctor approves or not. If it eases the pain or if it eases my mental state, I’m going to do it. I don’t care who says otherwise. They are not feeling what I am feeling. I guess growing up with that mentality, you learn you will bend or break the rules to deal with it all. I still do this today. I can’t say that that’s good and all but it does make me wonder if childhood is where it started.
Junior adolescence is where you learn lasting coping mechanisms. I think us hemophiliacs find barriers and shut things out. For me, it was imagination. Well, some were imaginative while others were odd exercises. I would actually self-soothe sometimes by rubbing the inside of my palm for like 20 or 30 minutes. It would help me zone out and forget about the pain. Ironically, I learned later in life that palm pressure is a proven meditation technique. I looked it up on the Internet and it demonstrated how to soothe yourself through rubbing your palms. I was addicted to rubbing my palms!
Addiction has a stereotypical relation to drugs, alcohol, and medications, but it goes much further than that. Some of my coping mechanisms I learned early on turned into a true form of addiction as I grew up. I would obsess over them. It could have been anything. In my younger years like high school or middle school, I would obsess over art. I would dive into it entirely. I connected with art because I could build or create something just like I was inside my head to escape the pain. I would get trapped inside my head and art helped me release it. You build this world in your head that’s imaginative and very vivid. You can get lost in your head for a little while. It can take you to some dark places too. It was very therapeutic because it allowed me to build a world in which I understood everything. It helped to escape my real world where I didn’t understand so much to go to one in which I understood it all. I would obsess over it.
I created a book of poetry during this time. It was my only way of translating the place in my head to a visual reference people could see. I wanted them to see it. I did not want to be alone. In my head, I was alone. I went there to cope, hide, or deal with things, but ultimately my imaginative world was lonely so I created my poetry book. My poetry was colorful and interesting. I touched on everything. I talked about politics, religion, or anything that provoked an emotional response. This was my way to release my emotions that I had locked up tight. This was my addiction for a while. I probably wrote 50 to 100 works. I’m not sure because I lost half of them when my book was stolen. It actually got stolen. Someone felt the need to steal what I created because it was a popular book. You see, I carried it around in school a lot! People would ask me if I had written anything new and I usually had. The works were colorful and sometimes offensive but it made me happy. I felt a personal violation when it was stolen, however life goes on.
Once I moved away from writing, I had such a void to fill. I still had my mental illness. I didn’t have an escape anymore. I moved on to space for a while. I had to go all-in. I had to have the books to read and the telescope. I had to dive in or not at all. Then, I moved on to cars followed by philosophy. In hindsight, I chose some of the weirdest subjects to obsess over. I just had to block out everything that I didn’t like about me or the real world I was living in. While these obsessions were educational, I would learn all I could then the void would return. The obsession no longer satisfied my distraction, or my need of distraction. So, I would move on to the next thing. These obsessions, addictions, were healthy in some ways; I just never learned to follow through with things.
As I entered adulthood, my need to satisfy my mental state turned to career paths. I figured if I could obsess over something so well and learn from it so in-depth, then I could do anything. This was the start of my new pattern–pretending nothing was wrong with me. I wore a mask to hide it all. This pattern did more harm than good actually, but it got me through the pain. For most of my 20’s, I pretended I didn’t have Hemophilia. This was easy to do when I felt like I could accomplish anything. I was lying to myself or maybe I wasn’t receiving the information correctly, I’m not sure.
I started working at a restaurant. I love restaurants. I still do today. They are very fascinating, beautiful in fact, however my body got in the way in the end. I lost focus and interest along the way, which made me bored. When I got bored, the void would return. This would cause my performance to wane. I realized I had two choices. One was to fix it which was hard for me if I had no passion to do so. The other was to run far away and build a new ambition. After six or seven years, I jumped ship and went to sell cars. Selling cars was like the heart of ambition. You could only build up over and over. There was no end to your success. You could keep going and going. I learned through this time that that was my cure–I needed a challenge that had no end in sight! There was nothing I couldn’t accomplish with a challenge.
Unfortunately, when I was selling cars, my body literally got in the way. I pushed my ankles to a more critical point. I started feeling them far more frequently. This ended my car selling career. From that point on, I think a lot of my career choices were more out of necessity, I went back to the kitchen, and worked in a daycare. I loved kids so that was easy, but I had zero interest in that whatsoever but it was necessary to pay the bills. From there, things just got harder because my body was slowing down my ambition.
In my mid-twenties, addiction became a more blatant reality as far as stereotypical terms go. I had to have a few surgeries during this time. When I was child, they gave me pain medication, however it wasn’t something I really noticed. It didn’t cross my mind that they were giving me something that made me feel nice but as an adult, things changed. When I had my ankles operated on, that was hard pain. The pain was so hard for me. I don’t know why it was so much more severe; it just was. In reference to pain medicine, as an adult I did notice that it felt nice. It was comforting. I didn’t want to let go of that feeling. I recall a moment in the hospital right after surgery where the strong stuff is starting to wear off, a nurse came in to say they were removing my IV to switch over to tablets. I didn’t say anything out loud but inside my head I had this involuntary fifteen seconds of RAGE. “No don’t you dare!” The rage passed and I thought well maybe they should take me off that. As time progressed, my ankles deteriorated more and more. I needed the medicine. I went to pain therapy and they prescribed me two-years’ worth of medicine. I honestly think I became addicted to pain medicine at that time for all the stereotypical reasons. People may come out and say you are dependent but they never dive into the real reason why. The pain medication meant that I didn’t have a void to fill anymore. The void was literally replaced with comfort, with something that calmed my mind and in turn calmed my ambition. This made me very complacent. This was a very unhealthy way for me to cope with everything going wrong. You see, by your mid-to-late twenties you start realizing how things are not working out. How your career is not working or how your happiness is clearly not working out. You mask all that unhappiness with anything that numbs the pain. Physically you are comfortable and mentally you find it so easy to believe that nothing will actually move forward so just stay comfortable. This pattern had become very destructive.
I had eventually seen the end of my yellow brick road with the pain medication. I knew my doctors were becoming more aware of my abuse. Here’s the funny thing though. The doctors will prescribe medicine because you need it. They will see you become dependent and then cut you off. It seems they don’t ever really want to touch on why you are addicted. I feel like there’s a gap there. It’s not like we’re a bunch of drug addicts looking for our next fix. There was a reason! I believe there are some mental health issues there. Instead of just cutting them off maybe we should investigate. Investigate what’s really going on here. In my case, it did not unfold that way. They didn’t cut me off. I just quit taking it but they knew there were red flags kind of being raised. It was mutual on both sides, I think. I feel like if the red flags were there then why didn’t someone do something or say something? There are a lot of cases where we are screaming for help and no one can see it. I am not referring to suicide but there’s clearly something wrong.
I went a good five or six years without pain medicine until my body caught up with me. They caught up with full force: ankles giving away, cartilage missing, bone marrow edema, bones missing, and even worse big chunks of my knees missing. The pain was vibrant. It was deafening. It’s very tough to cope. While you learn to cope with the pain, the pain creates barriers that cause many mental health problems. While mental health problems will take the forefront of what you’re dealing with, the pain will creep up on you to compound your issues. Wow, it’s like everything comes full circle except the weight is ten times heavier. The difference is this time you need to take the pain medication. You’re in your thirties now and you realize that you really do need to deal with these issues. In hindsight, my twenties may have been completely squandered due to my head being in the wrong place.
I think it may be true that when you reach your thirties you do start to reflect on life. You start taking things more seriously. You start looking at your own health, your family, your house, stability. It’s just a point in your life when you really start to acknowledge– Am I on the right path? Am I taking things seriously? Do I need to re-evaluate? Then you do. During this re-evaluation for someone in my position, I think it is healthy to see what you’ve been avoiding or not taking seriously and put yourself in the right path. I also think it’s damaging because you realize you are so out of your depth it isn’t funny. I’m thirty-four years old so I’ve only had about a five-year time period where I have started looking back and seeing that I am definitely not where I thought I would be.
Thinking back on everything I just said, and remembering the damage I have done through this whole process, it’s eye opening. I mean I’m sitting here talking about how it affected me. How it’s changed me over the years and everything else. I realize it really hurts those around you. There was a time especially during the addictions where I didn’t give the support needed to my wife for our family. I was hot tempered, rude. Addiction, especially pain medicine, can lead you in a very inappropriate manner. I never hurt my family physically. I never raised a hand or abused them but I neglected them. On top of everything else knowing the damage has created limitations, it costs you so much. How it affects your spouse and children: It’s your neglect because you’re so unplugged. Out of touch of what they need from you. Emotionally, physically, it just leaves a mark on them as well and I think it would be very selfish of me not to acknowledge that.
We’ve talked about career life so now let’s talk about home life because it comes to a point when you realize you can’t work. Home life can be difficult when you are not working. You are learning to accept you can’t work. For me, it has taken years to swallow that pill because men were raised to be strong, to tough it out, to do what is necessary to support your family. When that crutch (that ideal) is knocked out from under you, you look around and start questioning everything. Where did I go wrong? What am I supposed to do? What’s my job now? What’s my purpose now? I mean it’s crazy. I spend my days trying to make sense of it. It’s tough. I try my best to help raise my kids but there is still so much I can’t do. I cannot take care of my yard. I can’t fix most of the things in my house, not because I don’t know how but it’s expensive. I can’t supplement the income needed to do a lot of the necessary things so it can be depressing. Not being able to do what you’re supposed to do at home can be tough. I am thankful I get to see my kids grow up and that I get more time with my wife. There is just a huge absence of fulfillment. I’m not going to kid myself like I did in my youth and fill that void with some imaginary or pretend solution. In your thirties, you re-evaluate things. You can’t imagine putting or trying to put things back together again. That’s one screwed up fairy tale of Humpty Dumpty.
As an adult I can tell you that I internalize everything. I keep everything I might find too deep or too uncomfortable to say bottled up. That is what I’ve always done. I hide from the pain. I hide from facing it because that’s what I know. That’s what I’ve trained myself to do from an early age. I can’t say it’s done me any favors. I never really built good, social relationships. I would hang on to them; I didn’t learn how to deal with the dynamics of rejection or acceptance. I didn’t learn how to deal with the hardships or how to share them with others so that I could cope. This is why I think a lot of the mental health problems start far sooner than we think. It’s not when you experience extreme trauma as a teenager or when your thirty years old and everything is crumbling down because your body is really starting to show your after effects. I think it’s early on. Mental unhealthiness definitely evolved over time. It changes its forms and how you process it. Plus, how you deal with it definitely changes a great deal. But then I guess that pushes us into how we transformed ourselves into adults and how it affects us today.
In conclusion, I ponder all of this and hope it has shed light on mental health and Hemophilia. There is always going to be more issues. There’s always going to be more problems, and there’s always the compounded weight that hurts us mentally. In short, you go through all these struggles, lose your dignity, and lose your confidence. You just lose a lot. It creates an overpowering emotion to deal with, to process or to cope with. Presently, I am reaching out to find a way to deal with it. Honestly, I feel like there is this rage inside of me. And the rage I would not say is something I would release on the world. It’s a pretty powerful storm inside because of so many years of pent-up emotion. I am trying to find a way to let it out. I think that’s where a lot of us struggle. It’s just too much to sit down and have a calm conversation about; you know open Pandora’s Box and hope the world understands. Someone labeling us a psychopath or someone on the edge about to lose their grip. I hope others find the courage to talk, to let it out. I hope mental health awareness is more honest in what it looks like. I hope those who want to help have a better understanding of what’s going on inside our heads because it’s not simple. It’s not cut-and-dry. It’s not just sitting down and talking about last week. It’s everything. We have a lot of pent-up emotion inside of us and we can’t just unroll it like this beautiful choreographed thing. It’s just not that simple.
In closing, I hope that by sharing my story it will encourage others who like me, struggle with our mental and physical health. Your voice is so important and I hope you will share your struggles so together we can find our own unique, individual solutions.
January 18, 2019
My name is Lisa Bordelon. I am married to Kevin, retired MSgt., USAF and I have two young adult children, Ashley and Matthew. Both are diagnosed with von Willebrand Disease. Ashley has Type 1 Severe and Matt is Type 1 Mild. Ashley was not diagnosed until age four. Being in the military, you have many different doctors. I got tired of being accused of beating my child. Ashley was always covered in bruises, not to mention nose bleeds all the time that was diagnosed as allergies. After screaming and yelling, I finally convinced them to do some simple lab work. To their surprise, it was all abnormal and we were quickly sent to specialists. To be honest, I knew nothing about bleeding disorders, but was relieved to have an answer for all the bruising.
We learned about the chapter after moving to South Carolina from Iceland in 1998. Our first experience was attending family camp. It was great to finally learn about bleeding disorders from people that had experience as opposed to the internet which by that time, even with two children now diagnosed, was the only education we had had.
The best part of the Chapter was that we were accepted for who we are, no questions asked. The Chapter really impacted the kids. They met others like them with the same questions and concerns. My kids grew up with the Chapter, learning as they grew. Ashley was always involved, starting with working with the kids at age 12, while Matt who ran away at our first retreat (we found him calmly watching fishermen on the pier) came to know and care for his blood brothers, as they called themselves. Matt and Ashley have grown thanks to the Chapter with an increased knowledge of bleeding disorders and have become advocates for the community.
This all led me
to six years ago. The Chapter was going through growing pains. I made the
decision to give back to the Chapter we had learned so much from, to the
community that had become our extended family. As President, then Vice President,
I had the opportunity to travel to NHF regional meetings, and chapter
leadership conferences with chapters from all over the country. We
learned what worked for other chapters to increase bleeding disorder awareness
and ways to help our Chapter grow. We would bring these ideas back and share
with the Board of Directors. Slowly over time with hard work, Hemophilia
of South Carolina grew into a Chapter of Excellence. A place of community
support and education.
sharing at meetings, conferences and retreats. Making the public more aware of
bleeding disorders was, and always is, my goal. As a nurse I especially
enjoyed educating school nurses from all over the state. And I am proud
to say that if the word hemophilia is mentioned in my hospital–they come
looking for me. I in turn, look to the Chapter to continue to educate all who
As I end my six-year term in June, 2019, I look to others in the community to take the time and effort to give back to the Chapter that gives so much. We need to continue to change the world, one person at a time. Through our Chapter the community finds support, education and above all love. I thank you for giving me the privilege of serving you.
January 7, 2019
My name is Aaron Smith. I am here tonight with my wife Brantley and two boys, Grady, who just turned three, and Logan, age one.
We found out this past July that our son Logan has severe Hemophilia A. We have no known family history but we knew something wasn’t quite right from the beginning; it took forever for his circumcision to heal, frequent bruising in weird places, and a couple mouth bleeds. After the second or third mouth bleed, our pediatrician ordered bloodwork. We were terrified. I drove down to the hospital lab immediately and tried not to be overwhelmed by the thought of taking my baby to the Children’s Hospital. My heart sank, and I tried not to make eye contact with the dreaded “Hematology/ Oncology” sign over the door across from the lab. We waited for results for over a week and got more tests. We then waited for those results another week, and got more tests. After the third round of tests and what seemed like forever, we were scheduled for a consultation and I never thought I would be happy to hear the word “treatable”. Within a few weeks of our consultation, Sue Martin gave me a call and I talked with her for the second longest phone call I’ve ever had, I think it was 42 minutes or something like that. I felt an instant connection. She had similar experiences with her children and could relate to everything we went through. She said there are others that have similar stories and described what HSC has to offer.
In a time where we felt alone, worried, and desperate for answers, trying to avoid Google searches of God knows what, there was HSC. HSC has provided support by connecting us with others in similar situations, provided education and resources. More than anything, it is comforting just knowing that there are people that have our back in our new family.
This summer we were able to attend the “Keeping It Coastal” Family Camp and learned from some of the nation’s best resources. The Turkey Trot fundraiser really allowed our friends and family to show their support as well as bring awareness. It was really overwhelming to see how people are willing to help and genuinely care about others.
It is my hope that our family’s involvement in the chapter can provide others the same welcoming that we had into our new Hemo Family. I have wondered what the silver lining is with all of our new challenges and I really feel it is everyone in this room, our chapter, and the whole bleeding disorder community.