Editor’s Note: This article is adapted from an essay submitted with an application to the 2005 ExceptionalNurse.com Scholarship Awards. Because of the sensitive nature of the topic, the author has requested that only his initials be used.
I know I have more than the average nurse to contribute to the nursing profession. As a nurse with HIV who knows what it is like to live with a chronic disease and to go through the maze and humiliation of the welfare system, I have much wisdom to offer my patients and fellow nurses.
I have lost friends, family and coworkers to HIV. No, I didn’t lose them by their untimely death; I lost them because of the ignorance and fear that surrounds HIV/AIDS. There is a stigma of living with HIV that is perpetuated through the media. The stereotyped image of a person with HIV is someone who uses intravenous drugs, has unsafe sex with multiple partners and lives life on the edge. While this may be true for some, we cannot all be placed in the same box. Some people with HIV, like myself, simply acquired it through love and trust--a big price to pay for a meaningful relationship.
When I was diagnosed, my CD4 count or T-cells were 30 (normal should be above 600). I was working as an LPN and was enrolled in an RN program. When told I only had six months to live, I decided to go on a leave of absence from my job to travel and rest. I started the HIV meds, put school on hold, cashed in all my life insurance policies and started my journey as a “person with AIDS.” I went on Social Security Disability, Supplemental Security Income (SSI) and Medicare/MediPass.
During that time, I felt like a leper. I had few outlets for social interaction except for my HIV/AIDS support group. I lived on $1,000 per month. This had to cover my rent, utilities, car payments, co-pay for medications and doctor visits. I had little left for food or other needs.
For almost two years, I was on welfare. The Community AIDS Network helped with groceries and my personal needs. I lost weight, had many reactions to medications and stayed in bed most of the time.
Finally, I realized that I was not going to die as the doctors had predicted. I decided to go back to work. This turned out to be no easy task. A nurse diagnosed with AIDS is not something a health care institution wants on its payroll.
After much persuasion and networking I came off my leave of absence and started back to work part time. A year later, I was doing fine and my T-cells slowly, very slowly, started to climb. So I went back to work full time. In 2003 I found an online, self-paced RN program that worked well for me. The journey to become an RN will have taken me 15 years.
Walking In Their Shoes
I am a nurse, but I am not just any nurse. I am a special nurse with a unique gift that allows me to make a special contribution to my profession.
I have taken care of patients who were newly diagnosed with HIV and I have felt their shock, disbelief and anxious feelings of “what now?” When the doctor or nurse practitioner gives such news to a patient, the professional can only think and explain it in technical medical terms. Most health care professionals cannot feel what it is like to be told you have a chronic disease, one that cannot be cured even with today’s advanced medical care.
As the doctor leaves the room and the patient is left to ponder what happens now, I can step in and fill the void. I have walked in their shoes, remembering when I was told the devastating news, “You have HIV.” Back then, I had no one to turn to.
Now, I have the greatest gift of all to share. I’ve been there, experienced it, know the different treatment plans, and I’m a survivor. I have referred many of my patients to the appropriate agencies to help them obtain education about HIV, care options and support groups. I listen to their expressions of disbelief, their questions of “how did this happen to me?” And I can respond with the understanding and empathy they need.
When I disclose my status to patients, I always hear the same thing: “You don’t look sick.” My response is, “I didn’t know I was supposed to look sick!” Then we both laugh. Again, I hear the stigma. People with HIV are supposed to look sick. What better education for patients than seeing and talking to a real person who has experienced what they are going through? This is the gift I give.
When you live with a chronic disease day in and day out, you become familiar with what is changing in your body and in your life. You can educate and inspire your patients and coworkers just by showing up for work and setting a positive example. Over time, people learn to see you in a different light--not as a person with a chronic illness, but a person who takes what life dishes out and runs with it into their dreams.
I am that person. I go to work every day, and by doing so I’m contributing to the nursing profession and setting an example for all people with disabilities, whether chronic or acute. I’m a daily reminder that if you decide to take charge of your life and health you can do anything, no matter what type of disability you may have.
As I continue my career in nursing and my journey of HIV, I know I will continue to gain even more wisdom to share with my patients and colleagues. I now have diabetes, hypertension and lipoatrophy, all caused by HIV. Each one of these conditions is a disability in its own right. My example of living life to the fullest and not giving up, no matter how difficult or challenging it may become, will only help erase the stigma associated with disability. I believe that to have a disability is to receive a gift.
When you are given this gift, you can either choose to keep it wrapped up or you can open it up and learn to use it to help others. By choosing to open your gift and share your experiences with others, you begin the process of educating, becoming a role model and ending discrimination against persons with disabilities. It’s easy to sit on the sidelines, do nothing and watch the world go by. It’s hard to get on the court with a disability and play. But with the right tools, education and support, everyone with a disability can play in the game.
I used to question, “Why am I here, God?” But now I know the answer. I am here to share my positive gift with the world. I just didn’t know that I’m more positive than most people. . .until now.