Updated February 2013
Many people living with HIV (HIV+) are living longer, healthier lives because of the success of newer HIV drugs. In addition, newer HIV drugs often have less serious or troublesome side effects than older HIV drugs. Therefore, many HIV+ people who may have felt very ill and been unable to work when first diagnosed may now feel well enough to consider returning to work.
Returning to work and feeling productive can boost your confidence and make you feel better about yourself. However, the idea of re-entering the workforce can also trigger fears and concerns. Before you jump in, here are a few simple questions to help you get started:
- What does your health care provider think about your working? Your provider’s thoughts on your readiness for work, including what type of work and how many hours per week, will likely be based on your overall health and trends in your CD4 count and viral load.
- Have you tested your stamina (energy level)? Many job counselors recommend volunteering for a while to build up to full-time work. If you volunteer for an organization that you like, you might be offered a job there in the future. Start with a part-time schedule and gradually add more hours per week to test your energy levels.
- Why do you want to work? “I need a job for the money” is a good reason to work, but not the only one. Many HIV+ people who work report that the structure of a job helps them adhere to their HIV drugs and maintain a healthy lifestyle. For others, a job provides a sense of purpose or a social group with a sense of belonging that can be a type of family. What do you want your work to do for you?
- Do you have enough support at home, or in your close circle of friends? If work makes it more difficult to fit in some of your daily chores, will you have help from family or friends?
- How will work affect your eligibility for benefits, i.e., Social Security?
If you identify what type of work you want to do, and what you hope to get from working, your job search will be more likely to be successful. You may want to think about what you expect to learn, how it might expand your skills, and what benefits you could enjoy from working.
It may also help to consider:
- Your personality and skills, so that you can make a good match between what you like to do and the job description
- Work you enjoy gives you energy, while work you dislike drains your energy
- Talking with other HIV+ people who are working – about their jobs, their routines, their challenges and successes
- Some people may feel better but not well enough to return to their usual line of work. In this case, it may be helpful to think about returning to school or being retrained. Each state has a vocational rehabilitation program that helps people with disabilities be retrained or find appropriate work.
Your HIV status is confidential information. You do not have to disclose your status to a prospective or present employer. Here are some potential trouble spots:
- The application form. Some application forms ask whether you have any medical condition(s) that might interfere with your performing the job. Although you may feel an urge to disclose your status, telling an employer you are HIV+ is not necessary. Moreover, many HIV+ people work productively for years without HIV becoming an issue. The application form is looking for conditions that would prevent you from doing the job. It is not wise to apply for a job you know you cannot do. For all other jobs, the answer to this application question is "no".
- The interview. If you have been not been working for more than a couple of months, it is important to prepare for reasonable questions about the gap in your employment history. Reasonable questions from an interviewer might look like: “why were you out of the workplace for two years?” or “can you explain what were you doing during the five months between your job at (Company 1) and your job at (Company 2) in 2011?” These questions can be scary, but you can manage them well if you think of and rehearse answers ahead of time. For example, when asked about an employment gap, say calmly and confidently that “I was dealing with a family health problem.”
While it is illegal for interviewers to ask questions about your medical conditions, some interviews still do. In this case, reply simply that there is no barrier to your doing the whole job (e.g., “I can assure you that I can perform all the duties of this job.”).
- The pre-employment health survey that asks you to list all medications. Take the form to your health care provider and ask him or her to complete it. Encourage your provider to write something like, “(Your name) is under my care and takes no prescription medications that would interfere with her fulfilling the essential functions of this job.” Do not list all your medications. They are none of the employer’s business.
- The pre-employment physical. If your new job requires a pre-employment physical or lab test, it is probably because the employer is trying to find out if you use street drugs. An HIV test would require your written consent and be a pointless expense. Talk with your pharmacist before you have the drug test. Ask whether any of your HIV drugs can lead to a false positive drug test. If so, ask for the name of an alternate drug test. Tell the tester that you need the alternate test for a valid result. Do not disclose the medication or your diagnosis.
- Signing up for employee benefits. If you find a job with benefits, do not lie on application forms for health, life, or disability insurance. That is called insurance fraud. If you find a direct question about HIV or other diagnosis questions, ask how your privacy is protected. Turn in the form when you get a satisfactory answer.
Once you find a job, it is important to remember that you were hired for your skills. Whatever you believe about disclosing your HIV status at work, keep the focus on your performance. If you want to disclose at work, you may consider waiting for a few months so that you have a chance to get to know your co-workers and get a sense of how they might respond to the news that you are living with HIV.
If you disclose to one co-worker, it is important to be prepared for all co-workers to know your status. Also, although supervisors, managers, human resources (HR) staff, and company officers in charge of employee relations are required by law to keep your diagnosis private if you tell them, not everyone follows the laws and obeys the rules.
There are no automatic triggers for disclosing your HIV status at work. You are not required to disclose at work, even if:
- You are bleeding.
- You need a reasonable change in the workplace or the way things are usually done so that you can continue to work. This is called an “accommodation” and is intended to provide an equal employment opportunity to someone with a disability. In the US, people living with HIV are protected by the Americans with Disabilities Act. Although you are not required to disclose your status when asking for an accommodation, it is your responsibility to ask for one if you need it.
- Side effects made you late for work
- You are up for a promotion
- You need leave time to adjust to new medications
If you are thinking about going back to work, or returning to a full-time job after a period of part-time employment, it is important to talk with your health care provider so that you have the best chance of staying healthy during your work transition. A change in jobs or employment status is considered a major life stressor, even for people in perfect health and even when the new job is a totally positive, wonderful thing. Therefore, it is important to prepare yourself by planning ahead, making sure you have adequate support, and remembering that it is okay to go slowly and be gentle with yourself.