I attended my first women-only hemophilia retreat in the fall of 2016. To say the weekend was an eye-opener would be a gross understatement. It changed my life.
First of all, I learned that I was not alone in my struggles to understand lifelong bleeding issues. Second, I learned that the struggles I had were real and deserved to be acknowledged and treated. Finally, I began to understand the fight women have endured to receive accurate diagnoses and appropriate care.
Since the retreat, I have been to two national conferences focused solely on women with hemophilia. Additionally, I have connected with an online community of women with bleeding disorders. Through these networks, I heard countless stories of women who desperately sought care only to be turned away. It feels awful.
Frustrations with care
I live in a rural community, hours from the nearest hemophilia treatment center (HTC). About a year ago, I was struggling with knee pain that I now know was caused by a bleed, but I questioned it at the time. I was in contact with staff at my HTC but wanted assessment locally. They advised me to go to my local urgent care center to see if an ultrasound could be performed to determine if my knee was bleeding.
The second they heard I had hemophilia, I was denied care. I was in pain and just wanted to know if I should infuse factor or if something else was going on. Staff members at my HTC were willing to talk to them, but they would not listen.
My options were to drive over six hours to my HTC or sit in my local emergency room for hours. I chose neither — I limped around in pain and infused, per the recommendation of staff at my HTC. Thankfully, within a few days, I could walk on the knee again.
When I walked away from the urgent care center, I sobbed. I was in pain and just wanted some insight as to why. It was overwhelming, and I wanted the pain to stop. I felt exhausted from the intensity of the discomfort. In this case, I was turned away because I have hemophilia. Yet, many women are turned away from HTCs and hematologists who do not believe they have bleeding issues.
This irony was not lost on me. Many women fight to be acknowledged as having hemophilia because they do not have access to care. I was denied care at a rural facility because I said I have hemophilia.
Advocate with treatment providers
Following are a few pointers for women seeking care who feel they are not being heard or understood.
1. Document everything. Make sure you keep records of your bleeds, including photos. Take pictures before and after product use to document if it was effective. Write down the days when bleeding prevents you from participating in activities.
2. When you approach your medical provider, try to share information rather than make blanket demands. Help them to understand your symptoms and how they impact on your life.
3. Share information often. Do not wait for your yearly HTC appointment to share struggles. Document each incident as it arises, using a secure patient portal. Make sure to include as many details as possible, such as bleed cause, photos, etc. Ask that all documentation be placed in your medical record.
4. If you do not feel heard when expressing your concerns, use “I” statements with your provider: I feel ___ when you ___ because ___ and I need ___. For example, “I feel frustrated when you say I am not experiencing a joint bleed because I believe I may be, and I need you to run diagnostic tests to see what may be going on.”
5. Bring relevant research if you have it. If you have been genotyped and know the genetic mutation that you carry, bring information on the research into that variant to your appointment. In some cases, scientific research may be crucial in understanding how to diagnose and treat your bleeding issues.
6. Don’t give up. If you do not believe you are getting the care you need, keep asking. You may need to consider shifting to a different provider to receive appropriate care.
7. Make sure your care is female-centered. Some treatment centers for hemophilia have OB-GYNs on staff. Consider using one of these facilities.
8. Remember that you deserve treatment. You are not crazy. It is OK to want to rid yourself of pain and find healing. You are worth it, and it is OK to advocate for yourself.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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