The Virus That Shall Not Be Named

By April 16, 2014 Personal Story 6 Comments
Woman Screaming with Spider

Several weeks ago, while having brunch with a friend in New York City, I overheard two late twenty-something women talking about a mutual friend who was undergoing treatment for cancer. The blond girl in the seat parallel to me (and one foot away) said, “Yeah, and I think she had to get a

blood transfusion.” Her brunette friend responded, “Oh, that kind of sucks.” The blond girl replied, “I know, I feel so bad.” Then there was a long pause.

The brunette returned to the conversation with a whisper as she cut into her fried blue cheese stuffed date wrapped in bacon, “My dad doesn’t think you can get HIV from bodily fluids. So ignorant.” They snickered in unison. This is when the wheels in my mind started spinning and I stopped eavesdropping.

I looked at my plate. A mountain of deep green organic arugula leaves garnished with walnuts and pear slices, lemon juice and olive oil, sat atop it. I pondered the great irony of the moment. There I was, a 35 year old woman who has been receiving blood transfusions every few weeks since the age of three to treat a rare genetic anemia called beta thalassemia major (my body cannot produce functioning red blood cells on its own), adhering to a vegan diet, listening to two seemingly healthy women talk about cancer and “the virus that shall not be named” over a plate of fried cheese and bacon. I wondered if the two women were aware that their food choice was carcinogenic (i.e., cancer causing).

Beyond contemplating the very different methods that my neighbors and I used to fuel and nourish our bodies, I thought about the friends I had made throughout the years who literally committed suicide because of the social stigma attached to having a blood disorder. A heaviness sank in my chest. My mind grew dark at the absolute sadness and terror I felt over the subject of their conversation. Then I wondered what it was that makes us fear, whisper and poke fun at certain diseases? Is it because in the 90’s people began associating blood disorders with promiscuity and drugs? Maybe we think some diseases are less painful and easier to manage than others? Or is it because certain illnesses are viewed as being more lethal?

Today’s medicine has made HIV a chronic medical condition. Of course, it can be passed on to others through direct contact of bodily fluids, where most other diseases cannot, but unless you’re planning on having sex or sharing needles with someone with HIV, there’s no need for caution.

Humans believe that their minds make them superior to other inhabitants of the earth. The collective ‘we’ believe it is right to dominate and kill other animals for selfish purposes. ‘We’ believe that the earth’s land and its resources are there to use as ‘we’ please, and ‘we’ have uniformly agreed that certain life threatening diseases are more socially acceptable than HIV and other less known disorders.

Social acceptance of a disease is expressed through certain words and behaviors. If someone has cancer, for example, the topic can be boldly and honestly discussed. We understand and honor hair loss. But if someone has HIV, the conversation becomes soft, secretive, and often times mocking. We do not accept symptoms of this disorder.

How do we move away from our impulse to criticize what we fear and move into a more loving and inclusive mindset? When someone brings up the topic of a disease that makes you feel uncomfortable, ask yourself why you feel the way you do. Are you responding to your thoughts with irrational fear and ignorance or intellect and compassion? Are you educated on the topics that you are commenting on? Have you rightly determined if the topics you feel intimidated by pose a real or imaginary threat to your life? Remind yourself that all humans, regardless of medical status, need love, desire a sense of community, and seek health and happiness in their lives.

If you eat poorly (i.e. fried foods, processed foods, animal products), know that you are putting yourself at greater risk to develop a serious disease that will force you to experience pain, medical responsibilities, despair, and an overwhelming sense of your own mortality. As someone who began making routine hospital visits since the age of six months, who had no choice but to kept alive by transfusions of red blood cells from an early age, and who regularly goes to the hospital for medical treatment, I can tell you that when adults get sick, no matter what disease they face, they all respond with dread, terror and a fear of rejection from society.

My life and good health have been a blessing that has forced me to reflect upon some heavy issues. Humans are awakening into compassion for those who live with difficult health complications, because our food choices have made us more diseased and because the internet has brought many topics to our attention.

No one deserves to be negatively judged, labeled or seen as an outcast. To quote the ancient Roman Playwright Terence,“Nothing human can be alien to me.” Before you, a friend or a loved one becomes that person who needs to be reminded that they are loved and accepted, I challenge you to awaken into compassion now. Love each other equally. Let’s evolve together.

If you liked this blog post, please share it with a friend and tell me about any similar experiences you might have had in the comments below.


Love this content? Sign-up for updates…it’s free!

Love this content? Sign-up for updates…it’s free!

Let’s remove stigma together,

JOSEPHINE BILA, M.S.W. has been receiving transfusions to treat a rare genetic blood disorder for over 35 years. Her life experience, advocacy, and schooling helped her become an Expert Patient Representative to the United States Food and Drug Administration’s Office of Special Health Issues. She is an inspirational speaker who has presented to audiences around the world. Her written work has appeared on Yahoo!, CNBC, The Huffington Post, and many other outlets.




  • JosephineBila says:

    Suelou  Oy vey. What a nightmare. People just don’t understand and it’s good that you stood your ground by going back. I’m sure it hurt at first, but keep standing your ground and being the change.  Your presence will teach people and that will be a gift that helps the world evolve one person at a time. xo

  • JosephineBila says:

    Sheila Bergquist  Thank you so much, Sheila. I’m smiling from what you said. I’ll carry your words with me. I really appreciate it. I’m sorry you’ve been hurt. That’s why I hope to build a community of like-minded people. Together we can change people’s perspective on these topics. xo

  • JosephineBila says:

    CarlaGolden  Thank you so much for the wonderful reminder, Carla.  Sometimes it’s hard to see for myself. xo

  • CarlaGolden says:

    I’m sorry you overhear ignorant comments like this, Jo. Let them serve as a reminder of how much you are needed in this world to educate the public. xo

  • I have never been able to understand how some people can be so lacking in compassion. I have been hurt by these people and I will never understand their minds. I am so sorry that you have had to be so hurt too. Remember, what others think is not important, even though we feel like it is. And remember also that there are so  many people who love and admire you, including people you don’t even know…like me and your other readers. Hugs to you and here’s hoping more people can find some compassion in their hearts.

  • Suelou says:

    I’m so happy that you brought up the topic of “socially acceptable” diseases. Your story brought tears to my eyes. As crazy as it sounds I have often wished that I had a more common disorder- one that the general population understood. My type of blood disorder causes my skin and eyes to be quite yellow at times. Once while on a student teaching assignment for my masters degree, I was asked to go home by the school principal. He explained to me why HE thought I was yellow and that he didn’t want me to get the children sick. I was completely stunned and speechless. I did leave as requested, but I returned the next day ( ;

Leave a Reply

Read more:
Jo's strength drawing
How to Manifest Positive Outcomes With Other People Part I