by | Mar 30, 2013 | Magazine, Nurses with Disabilities
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.
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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.
by | Mar 30, 2013 | Magazine, Nurses with Disabilities
As the nation and the world witnessed in the wake of the September 11 terrorist attacks, police officers and firefighters who get hurt in the line of duty are treated like heroes—and deservedly so. When one of their own is injured or becomes disabled, these professionals rally together to help their fallen comrade, providing both emotional and financial support.
Unfortunately, this is often not the case in the nursing profession. Based on my own experience as well as those of other RNs in the same situation, nurses who become disabled due to on-the-job injuries are far more likely to be cast aside by their employers and colleagues than to receive their solidarity and support.
With the nation’s nursing shortage now at crisis levels, more RNs are becoming injured and permanently disabled because of unsafe working conditions. Today’s understaffed health care workplace, where severely overworked nurses are staggering under the burden of unprecedentedly long hours and increased patient-to-nurse ratios, is an injury time bomb waiting to explode. Consider this scenario:
You arrive at work just like you have done for years. Your patient assignment is already a heavy one when three more admissions come your way. You go into Mr. Jones’s room to help him change position. Even though this patient is a large man, asking one of the other floor nurses to help you lift him is not an option, because their workloads are just as frantic as yours.
So you do it yourself—and then you feel an incredible pain in your back. The pain shoots up your neck, causing an unbearable headache. Just as quickly, you experience numbness in your arms and legs, and you fall to the floor. Obviously, you need immediate medical attention. But if you leave the unit, who will take care of your patients?
Because you are not an indestructible Supernurse, however, you have no choice but to go to employee health. Meanwhile, your colleagues are feeling resentment at having to take on your patients and responsibilities in addition to their own. They project their frustrations onto you–and now your coworkers and friends are upset with you because of an unforeseeable accident that was not your fault.
Employee health tells you that you can go back to work if it is light duty–is there any such animal as “light duty” in nursing?–or else you will have to take the next 10 days off. So you stay home for the next week and try to recover. But after a few days, your condition worsens. Now the nightmare begins.
Your medical insurance will not cover you for the accident because it was work-related. The workers’ compensation insurance company insists that you be seen by one of their doctors. After three hours of sitting in a waiting room, the doctor finally enters, pushes you in a couple of places and tells you, “You’re fine, go back to work”—even though your pain is so severe you can barely walk or stand.
Your coworkers can’t understand why you are not coming back to work if the doctor said you are fine. You must be malingering, they conclude. And what if you are unable to return to work for weeks or months? What will you and your family do after the paychecks and disability-leave benefits run out—while your medical expenses continue to mount?
Money Talks
While what I’ve described may sound unbelievable, several employment-law attorneys I consulted after my accident, including the lawyer who is currently handling my case, report that my experience is not unique. And, they add, the reason why this situation keeps occurring can be summed up in one word: money.
Employers pay the premiums for workers’ compensation insurance with the understanding that they want their employees back to work as soon as possible. The insurance company, in turn, wants to keep its costs down by paying out as few claims as possible. Since money talks, the party that is paying the premiums is the one whose interests are honored. As the injured nurse, you quickly learn that you are not a priority with the insurance company.
As for the question of how workers’ comp doctors can get away with telling severely injured nurses they are well enough to return to work despite obvious evidence to the contrary, who is going to go after them? Disabled nurses who have no money to take them to court because they now have no income, medical coverage or workers’ comp benefits?
In New Jersey and some other states, an injured employee is denied by law the right to sue their employer for negligence or even force them to have the worker’s compensation insurer pay for their lost wages or medical care. To make matters worse, another reality I learned the hard way is that work-injured nurses must endure the humiliation of having people from the insurance company follow you and photograph your movements in the attempt to prove that you are a fraud. As a result, you must obtain a lawyer to protect your rights, incurring even more expense.
Depending on the severity of your injuries, this nightmare can drag on for years, leaving many disabled nurses unable to pay their bills or receive appropriate medical care. Some may even lose their homes and their marriages. Many of the work-injured nurses who have shared their stories me have had their cases in litigation for anywhere from eight to 15 years before they were settled. And even though these nurses’ experiences seem to indicate that such cases are usually settled in favor of the disabled worker, why are we forced to wait so long to receive justice?
Some workers compensation companies have tried to argue in court that the nurses are faking their injuries by using their medical knowledge. This is simply absurd. Are police officers who are wounded in the line of duty accused of shooting themselves because they carry guns? Are firefighters who suffer from smoke inhalation accused of starting the fire because they have knowledge of fires? Why does this seem to happen only in the nursing profession—a field whose very reason for existence is to help the sick and injured?
An Unequal Commitment
In England, a government agency, NHS Direct, has been looking into solutions for assisting nurses who have become disabled due to workplace injuries. As reported in the September 2000 issue of Nursing Times, a “work-based assessment is done and ergonomically designed equipment is provided to meet their needs.” Here in the U.S., the federal Department of Vocational Rehabilitation provides resources—such as assessments, educational funding, hearing aids and computers—to help work-injured persons resume their careers or transition into new ones.
But the nursing profession, whether in the clinical setting or in academia, has yet to demonstrate this same level of commitment to helping nurses who have fallen in the line of duty regain their professional lives.
Some work-injured nurses do manage to continue their careers by returning to school and earning advanced degrees. But this, too, is a long process with its own challenges, barriers and prejudice caused by preconceived images of people with disabilities. According to a recently published Minority Nurse article on nurses with disabilities, “because of a long-standing myth that health care providers must be physically perfect…many [disabled nurses] are told that they have no business pursuing or continuing a career in health care altogether.”
The passing of the Americans with Disabilities Act (ADA) more than a decade ago has done much to help level the playing field for disabled nurses. But still, change is slow. A February 2001 Nursing Spectrum article noted that “career transitioning is hard work for disabled nurses…new grads and experienced [nondisabled] nurses are also in competition for the same positions. It’s a buyer’s job market.”
As nurses, we devote our lives to caring for our patients—but when we are the ones who are hurt and need help, we don’t receive the same level of care. When injured nurses are in danger of losing their livelihood, the nursing profession should be part of the solution, not part of the problem. Disabled nurses have a right to expect their employers, educators and colleagues to step up to the plate for them and show the same professional support that police and firefighters do. We deserve more than to be cast aside like forgotten heroes.
Author’s Note: Thanks to Carolyn Zagury, RN, PhD, for her sincere help and support.
