When you look at me, you’ll see a quirky, colorful, loud, and active person, yet at the same time, I am reserved. I am of average height and weight, and am known as a hiker, a cyclist, and (for very short stints) a beach jogger. I smile a lot, even on days when I would rather not.
From the outside, I look normal. I act normal. People treat me as if I am normal (as normal as “normal” can be).
But I am not normal. I have an invisible disability. I have hemophilia. I am a woman with hemophilia. Those parts of my identity are highly misunderstood.
A blessing and a curse
Having an invisible disability is both a blessing and a curse. I am treated like everyone else, which I prefer. But that means sometimes people do not understand all that goes on beneath the surface. People don’t know when I have been in pain for weeks with a pain that medication cannot touch. No one is aware that I am hiding a limp because the weight on my knee is torture. I’ve chaperoned athletic events when I should have been off my feet.
When I purposely divert myself from an angry person on the street or a potentially volatile situation, I may be thought of as cowardly by those who do not know my situation. But I am not cowardly. I just want to keep myself safe and healthy. If I break up a fight on the street or at work, I could get a bleed and miss work for days. I don’t want to do that, so I actively assess my safety at all times.
I have worked in school systems my entire life. When I am sent to monitor an area’s safety, I do so with fear. Truth be told, many staff members sent out during a threat are worried. I just worry a bit more.
Heaven forbid any of us were harmed, but if I were wounded, the consequences would be more severe. But I still go. I don’t remind people they are sending someone with hemophilia into a potentially dangerous situation. It is dangerous for everyone. My career choice means I am dedicated to taking the risk, just like my fellow staff members.
If the risk is less dramatic, like a student throwing chairs on a bad day, I may ask a peer to cover for me. In those situations, I own my vulnerability. So far, my colleagues have been understanding. It’s not worth risking days off work to step into a situation that others could address.
Service dogs and advocacy
I live in a rural area, am physically active, and have a service dog. She is being trained to get me help if I ever get hurt. She also detects joint bleeds and will bark to alert and protect me if she feels I am in danger. Because I look healthy, I’ve had to explain her presence, which is a wonderful opportunity to educate individuals about bleeding disorders. I also try to raise awareness for women with bleeding issues.
Most people I know say they would prefer to have an invisible disability. They feel they are blessed to have the power to reveal (or not) their health struggles. So many individuals are not afforded that luxury and have disabilities that are highly visible and cannot be missed. Even when I struggle to keep up, I must admit that I am happy when people forget I have a disability and when I can feel as “normal” as those around me — whatever “normal” means.
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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