Becoming a hemo wife

• Tell me about your hemophilia story. 

My hemophilia story began in 2008 when I met my best friend, Kane! We were unaccompanied minors that shared the same connecting flight. We ended up going to the same music camp for the summer! Since we lived in different states, after camp, we friended each other on Myspace to keep in touch each other! During camp, he briefly mentioned that he had Hemophilia, but I had no idea what that meant at the time. He use to post videos of when he would infuse himself for a bleed and it was scary! I had an unhealthy fear of needles, so I never made it all the way through the video.
In 2011, we started dating. Then in 2015 we were married! All throughout our years of dating, his hemophilia was never an issue because we lived in different states and were rarely together during his bleeding episodes. A few weeks into our first year of marriage, Kane had an accident at work and was unable to walk for a few days because of a bleed. He was fired from his job shortly after for missing too many days without a doctor’s note. This was the first bleed in all of the years knowing each other that I was able to witness. This is when his hemophilia became real for me. After our long struggle with getting his health and medical record on track, we are now managing his hemophilia, instead of his hemophilia managing our lives! 
Being the wife to a hemophiliac has shaped my career path to patient advocacy in the legal field. Sharing the challenges we have faced during these last five years of marriage on podcasts and similar outlets, has only solidified my passion for our hemo family. This is what keeps me excited to see where our hemophilia journey leads us!

• What was it like to go through the learning process of hemophilia? 

We actually learned about his hemophilia together! He did not have stability or a local HTC growing up, so he knew just about as much as I did. It was hard for both of us emotionally. He was not very well educated in his own diagnosis, and I was still learning myself. It was very discouraging at times. When I called the hospitals and doctor's offices that treated him when he was a child, a majority of the records had been destroyed during Hurricane Katrina. His adolescent medical records lacked consistency and many years of information were missing. It was very difficult getting him established without the original diagnosing medical records. Since he had no insurance, we could not afford the tests to get diagnosed, nor able to get time off of work to take the tests necessary to get a new diagnosis. Over the last 5 years of our marriage, we have learned the ins and outs of his hemophilia (so far), and we have done it the hard way. However, I am so glad that we learned it together. We have been each other’s sounding board, and I know that his hemophilia diagnosis has brought us closer together.
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• How did you feel? What were your fears? How did you overcome?

Without being involved with bleeding episodes during the years we were dating, to suddenly being together all of the time and experiencing every bleed with him, it was really scary for me. It also added a  strain on our marriage. I didn’t feel confident in my ability to accept so much life changes at once. I felt defeated at times, like I should have known so much more about his hemophilia before we were married. That way I could handle the emotional and mental complications, chronic pain, and the bleeds that occur throughout his life. Living in denial was much easier than accepting his hemophilia at first, until I couldn’t anymore. I experienced every stage of grief within our first two years of marriage. I feared what life would be like as we both grew older, what our financial status would look like, what kind of job he would have, what kind of income we would need to afford his medical expenses, what burden his hemophilia would put on our future children and the long term effects of his bleeding disorder. I stopped living in constant fear when I started accepting his hemophilia as a part of him, and a part of our lives. I stopped viewing his diagnosis as a road block and started viewing it as an open road to travel together.

• Have you ever felt like you were alone?

I have definitely felt like I was alone, and still catch myself feeling alone from time to time. Since we learned about his diagnosis together, I really didn’t feel the need to express any of my feelings. Learning about his hemophilia after we were married was difficult because I felt like I needed to be emotionally strong all of the time for him. Having friends and being more active in the community has made it easier, though! There is just something about a hemo family reaching out to you and telling you it will be alright even when the hard stuff happens.

• When did you start to embrace hemophilia?

    I would say I started to embrace his hemophilia after our struggles with insurance coverage subsided. After he was insured, we were able to strengthen and update his medical profile. Once we fully knew what we were dealing with, it was easier to adapt to our new normal and I could mentally process what his hemophilia needs. 

• What have you done to cope with pain and/or bleeds?

Living with my husband has helped me cope with his hemophilia. He has made me brave! Before him, I had an unhealthy fear of needles. Now, thanks to my human pin cushion, I can infuse him on days that he doesn’t have the energy. We handle his hemophilia as a team, and take on any challenges he faces together. 

•  When did you get involved with the hemophilia community? 

    After watching my husband suffer through a really bad knee bleed, along with all of the insurance issues that came along with trying to get factor at home. This forced me to reach out for help. In 2016 I called National Hemophilia Foundation, since it sounded like a good place to start! Soon after reaching out, I was contacted by Kollet Koulianos, NHF’s Senior Director of Payer Relations. She helped me navigate insurance all the way up until we had medication at home. She also encouraged me to look on social media for support groups and reach out to our local HTC. Without her taking the time to educate me on so many things, I wouldn’t have had the confidence to eventually attend educational events in our local community to meet others like us.  

• What have you done to help people living with hemophilia?

    I have passed on resources to others that I see struggling in the community! I love recommending specialists, assistance programs, medications and infusion supplies we have had positive experiences with.

• What are you passionate about today? What are you excited about for the future? 

I am passionate about seeing other hemophiliacs receive adequate health coverage! I am excited to see new treatment options available for the community and health protections put in place that consider the bleeding disorders community as a whole. 

• If you could encourage anyone living with hemophilia who may be reading this article, what would you say to them?

    Ask questions! Be informed about your health and your health insurance! Be involved in the community! There are people who absolutely want to know you and help you live a fulfilling life. Our lives have been changed through the generosity, conversations, and the time and efforts of those in our community.