By Pamela Lauer
Advocating for myself became the biggest life lesson of my adult years, and I have learned how to advocate in many ways. To continually learn more about my condition, I attend educational workshops in-person and online and seek out books and autobiographies of others with hemophilia. I speak candidly with my healthcare team - my primary care doctor, the hemophilia treatment center (HTC), acupuncturist, specialty pharmacy representative, and pharmacist.
Every bleed I experience is detailed in writing - what happened, the specific symptoms and my level of pain. My notebook comes with me to each doctor’s appointment so I can refer to particular experiences and not be vague about the symptoms or extent of pain. For some reason, I feel a need to prove myself to show I am not making things up or exaggerating.
A big part of self-advocacy has been accepting I may need help in an emergency. It is still quite humbling and difficult for me to share my disorder with employers, co-workers, friends and family members. My speech is practically memorized. “I have hemophilia A. If I experience a bleed, I need the clotting factor that is kept in the fridge. If I get hurt or hit my head and can’t speak for myself, the factor needs to come to the hospital with me. The EMTs should be told I have hemophilia and that I have standing orders at our local emergency department. Sharing this openly is something I’m still working on. I don’t want to be a burden or the focus of attention, but I know how much it matters. All the hard work I have gone through to understand my condition is in vain if I am injured and no one knows how to help me.
Details about my bleeding episodes are shared with one of my close friends or a trusted family member. I tell them the symptoms and associated difficulties and ask them to attend my HTC visit with me. This way, I have someone to help support my history and remember what I need to mention if I get flustered and forget something important. Plus, they may hear something from the doctor that I didn’t or later forget.
However, the biggest part of advocating that needs work is learning to trust myself. I am a 43-year-old daughter of a man with moderate hemophilia A. My father passed in 2001 from hepatitis complications. He was a hard worker and a hard bleeder. My dad tried his best to hide his bleeds from my mom, waiting until things got really bad before seeking treatment. When he finally did treat, his sister, a nurse with two affected sons of her own, would come to help him. Later, the Red Cross would visit our home to treat my dad. He never learned how to self-infuse and never let me stay in the room while he was being infused, seemingly ashamed of his bleeds.
My dad knew I was a carrier but as far as he understood, girls couldn’t have hemophilia. While in middle school, my teacher called him voicing concern over my constant bruises. He brushed his worries aside and told him to keep his nose out of other people’s health problems. Back then I was upset my father had been rude to my teacher, but now I understand the stigma many men with hemophilia faced at the time.
When I was 34, I had a hysterectomy and rested in bed as advised. However, a full month later I began hemorrhaging severely and went to the emergency room where I was labeled a “symptomatic carrier.” Four years later my son and I were celebrating the end of the school year by playing on a trampoline. We were jumping, laughing, and singing Alice Cooper’s “School’s Out” when I attempted to land on one leg like a ballerina. Trust me, I was nothing like a ballerina – it was not graceful or pretty as I managed to completely tear my ACL.
After spending the whole night in an emergency room and not being seen promptly, I learned what was going on. A nurse who was leaving her shift quietly pulled me aside as I was waiting for a taxi and confided that the reason it took so long for me to be seen is because I had written “Hemophilia - symptomatic carrier” on the intake form, and the staff was very hesitant to treat me for fear of not knowing how.
“Maybe don’t tell people you have a bleeding disorder next time?” was her advice. She couldn’t have been more wrong! I do just the opposite. I practically scream it from the rafters when I enter an ER. I make sure they know immediately and tell them what I need because often, they don’t know.
A few weeks later, finally armed at 38 years old with a proper diagnosis of mild to moderate hemophilia A, my first dose of clotting factor was administered for the ACL surgery. During the next two weeks at home, I self-infused via a PICC line. My mom helped me get through the surgery. Unbeknown to me at the time, she carried some internal guilt. She later told me how sorry she was that she didn’t do anything to treat my bleeds growing up. She blamed herself for my current problems. Of course, I told her it wasn’t her fault. How could it be when even doctors didn’t acknowledge that women could have hemophilia?
Unfortunately, within three years, two more surgeries were required for a meniscus debridement and then an ACL replacement. I now take factor prophylactically three times a week. My ankles are my newest problems – painful swelling from minor activities such as doing housework or walking short distances on the beach. I spend a lot of time with ice packs on my elevated knees and ankles.
After ignoring and discounting bleeding episodes for most of my life, it has been a difficult journey to understand what one actually feels like. Part of my path toward healing has been watching videos of hemophiliacs explaining what a bleed feels like. Yes - I was, in fact, experiencing bleeds for years. Although I still have inner battles with denial, I am learning to comprehend when something isn’t right and know that I need to trust myself.
When a doctor asks about my pain level, I respond, “Well, that is a trick question! What may be a 7 for some people may only be a 3 to me. I am in pain all the time.“ It’s not specifically my doctor’s fault that I am in chronic pain, but it’s hard to ignore the medical world’s dismissal of a woman’s bleeding. Until very recent history, doctors were not trained to believe that women can have a bleeding disorder. Without a proper diagnosis, many women labeled as symptomatic carriers have not received appropriate treatment, subsequently living their lives in chronic pain.
I must be vocal and definitively lay out how I feel to ensure I am being heard. Just saying, “It still hurts” is ineffective. They will tell me to take more painkillers. I have learned to say, “It hurts all the time, and I do not want to live on painkillers my whole life. However, the level of pain is debilitating.“ It’s repeatedly reminding doctors that I now know what a bleed feels like. Most of my concerns aren’t listened to the first or even second time they are mentioned to my physician, but the more often I bring it up, the more likely I may be taken seriously. It shouldn’t be this hard to be heard. It shouldn’t be so easy to be ignored.
Advocacy is so much more than just sharing my bleeding episodes and injuries with my HTC. It is speaking up and speaking out. It’s reminding treaters that symptomatic carriers are women with a bleeding disorder. It’s reminding myself that I deserve to maintain mobility and joint health and be able to infuse factor when I know I am bleeding. Advocating at offices that don’t often see hemophilia patients is as important as speaking up at my HTC. My dentist, acupuncturist, chiropractor, yoga instructor, tattoo artist, and even my friends and family sometimes need to be reminded of my bleeding disorder. Okay, I’ll admit, I even need to remind myself sometimes!
Another form of advocacy is one that many people do not consider - mental advocacy. It’s difficult to find a therapist who understands what it is like to live with hemophilia. Instead, I have reached out to the bleeding disorders community and have found it vitally important to my mental health to remember I am not alone. Attending female retreats, online meetings and workshops on infusing, pain management and mental health support groups truly helps. Speaking candidly with others who are affected has brought me some peace of mind. My family sees what I go through, but other bleeders know what I go through. The time I have spent communicating with the bleeding disorders community is monumental to my mental state. When I leave these gatherings, I know I can do this. I can go on as others have before me and others still will.
For me and many other women, advocacy needs to stop being a battle to be believed. The recent recognition that women can have inadequate levels of clotting factors and experience bleeding episodes is a huge step forward for future generations, but it’s just the beginning. Advocating for myself is advocating for other women just like me. We are in this together!
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
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