It’s Not Easy Getting Appropriate Care

It’s Not Easy Getting Appropriate Care
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Accessing quality healthcare can be a struggle. Women with hemophilia have added challenges that range from not understanding their own bodies (after years of ignoring symptoms) to struggling to find knowledgeable healthcare providers.

Growing up with an undiagnosed bleeding disorder meant years of dismissed symptoms. I was in pain but was told I was not. I was told the swelling in my ankles was insignificant. I learned to ignore the signs my body gave me that something was not right. When I did seek help, I was reminded that I should ignore what I knew to be issues deserving of acknowledgment and treatment.

I believe it has been dangerous for me and other women who have spent years being dismissed. Most of us are independent, strong, and do not want to be a burden. It takes courage for us to seek help. We are not faking symptoms. We are looking for answers.

Pay attention to your mental and physical health

We must listen to our emotions. Anxiety and panic can be signs that something is physically wrong. Is there a physical issue that is causing anxiety? Or is anxiety causing a physical issue? It can be a challenge to tease out the cause and effect.

Listen to your body. There are physical symptoms we expect, such as swelling or joint pain. But symptoms may be less obvious. You may feel heat sensations, pins and needles, or bubbling.

You are not a hypochondriac

Before I received an official diagnosis, I was with a partner who did not like it when I was unwell. When I questioned bleeds, I was called a hypochondriac. My pain was minimized and dismissed at home and by medical professionals.

Eventually, I learned that I was bleeding and received the appropriate treatment. I no longer suffer the symptoms I once did. But I had to free myself from the messages that blocked my access to care.

Don’t miss critical symptoms

Seemingly small symptoms can mask big problems. Sometimes, we think something is normal because it is all we know. I had heavy periods when I was growing up, but I didn’t know they were abnormal because everyone complained about their periods. Sometimes a symptom that seems insignificant is a sign of a bigger issue.

Document everything. If you have concerning symptoms that won’t go away, write them down. Keep track of when the symptoms occur, what you were doing before they surfaced, and what makes them better or worse. Keep in mind that symptoms come in many forms.

Do not give up

If there is one thing I have learned from my journey, it is to not give up. If you don’t feel right — whether the symptoms are specific or nebulous — do not give up. Keep talking to medical professionals and don’t let them dismiss you.

After years of being told that our symptoms are not real, we may start to believe it. This creates the potential for scary situations. It could exacerbate a medical condition if serious symptoms of underlying problems are ignored.

You deserve an accurate diagnosis and appropriate care. You are worth it. Do not ever forget that!

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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.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family.
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