Moving Beyond Shame

By Rob Banaszak on August 7, 2012 in 2012 International AIDS Conference, Access2Care

Kate image Hope Tatoo

NOTE: This blog post also appears on the website of The Well Project here. As part of AIDS United’s Access to Care initiative, AIDS United and The Well Project are working together to share the stories of several HIV positive women, their journeys of getting into the life-saving care they need, and their experiences of attending the International AIDS Conference in Washington, D.C.

I’m incredibly fortunate that I have not had many barriers in access to treatment for my HIV.  I have great insurance, the ability to pay for my medications (through my co-pay) and even a Health Savings Account (HSA).  A Health Savings Account (HSA) allows you to specify a certain amount of each paycheck toward health care expenses, such as co-pays.  This is great because it is pre-tax, is deducted from your paycheck each payday and the amount you allocate is available in full at the beginning of each year.  Honestly, the HSA has been my saving grace because I don’t have to budget for my family’s medications the majority of the year (until our HSA has been exhausted at least).

My biggest barrier in accessing treatment has been myself.  I must overcome the embarrassment and shame each time I go to my doctor.  Honestly, I still get nervous after more than 5 years of treatment.  Even attending the dentist or family doctor makes me anxious.  I often wonder if the staff talks about me, asking questions amongst themselves and speculating how I became infected or what I must have done to “deserve” this.

I struggle with whether or not I should even disclose to some health care providers, simply out of embarrassment.  Now, I have always disclosed to health care workers, I assume I’m protected by HIPAA (in the United States, health care information is considered confidential through federal law), but I still have a moment of hesitation.  The stigma associated with HIV scares me to even disclose to many of my friends and family.  I feel like I have worked so hard over the years to build a reputation of an intelligent, successful woman and fear rejection of those around me.

My husband has helped me in beginning to overcome this barrier.  Sometimes it’s hard to admit when your husband is right!  My husband has been supportive throughout this process.  But over the past year, has been exceptionally supportive.  He, like anyone, needed time to cope and deal with his diagnosis.  Once he was comfortable with his status and the fact that he didn’t do anything to “deserve” this, he has encouraged me to do the same.  He often tells me “Who cares what they think!  We didn’t do anything ‘wrong’ and shouldn’t be embarrassed.  We’re a loving family.”  (Again, I hate to admit when he’s right!)

My husband’s acceptance of our HIV status has led me to seek ways that I could advocate for those living with HIV, particularly in lifting the stigma attached to such a diagnosis.  Just as women have fought for women’s rights and the gay population has fought for gay rights, we affected by HIV must fight for HIV rights and thus reduce the stigma.

In attending the AIDS 2012 conference, I attended a session entitled “Women in HIV Research; Affecting Change“, which was organized by The Women’s Research Initiative on HIV/AIDS (WRI) and Dawn Averitt Bridge (which just so happens to be a part of The Well Project).  I had expected to hear how women were so cooperative and adherent to research studies.  After all, women seem more responsible than men!  But I learned that women face more barriers when participating in research studies.  According to the Women’s Research Initiative on HIV/AIDS, “women may face different logistical challenges than men when participating in research, such as familiarity with research sites and facilities, childcare and transportation challenges and lack of partner/spousal support of research participation.”  Honestly, I hadn’t considered this, but it made perfect sense!  I simply hadn’t been personally affected by these barriers, so had not considered them fully.  I am so grateful to have my own transportation, a supporting family to help with childcare and general support.  I pray for the women who are not as fortunate.  All women living with HIV are beautiful and deserving of research studies and treatment in general.  My hope is for everyone to be able to access those services and support which they need.  We are all worthy!

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