This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.
- How to Tell Others You Are HIV Positive
- Telling Your Employer You Are HIV Positive
- Telling Your Child's School That Your Child is HIV Positive
- Personal Perspectives
There's really no easy way to tell someone close to you that you have a life-threatening illness. Test Positive Aware Network suggests the following approach for breaking the news to the "significant others" in your life (especially your parents):
1) Assess the reasons you want to tell your friends or family. What do you expect from them? What do you hope their reaction will be? What do you expect it to be? What's the worst possible reaction they could have?
2) Prepare yourself. Gather clear, simple, educational brochures, hotline numbers, pamphlets and articles on the disease. Take these with you to leave after your discussion.
3) Set the stage. Call or write and explain clearly that you have to meet with them to discuss something extremely important. This is a once-in-a-lifetime experience for all of you--don't treat it in an offhand or rushed manner.
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4) Enlist help. Ask a close friend or family member who knows the situation to come along or write a letter to your folks asking them to try to understand and reminding them that their acceptance and support are vital. Ask your physician or therapist to write a letter to your folks as well. This can be most effective--many parents will believe or listen to a stranger before listening to their own child.
5) Be optimistic. Accept the possibility that your parents are caring and rational adults. Likewise, you need to be as caring and rational; having a chip on your shoulder or selling your parents short is not going to help win the support you need.
6) Let the emotion come through. You are not asking to borrow the family car. The prospects to be considered are as frightening for them as they are for you. Now is not the time to assume false fronts or joke away the more serious implications.
7) Let them know you are in good hands. Explain how you are taking care of yourself, that your physician knows what to do, that a support network exists for you. The single thing you are asking of them is love.
8) Let them accept or deny it in their own fashion. Do not try to change their position right there. Leave them the material and put an end to the discussion if things go very badly. Try not to revisit past discussions about lifestyle.
9) Give them some time to digest the information and adjust to the news. After a reasonable period of time, call them back to assess their reaction.
10) ACCEPT their reaction and move on from there.
Attempt to keep the lines of communication open. Approach the process of telling with the best expectations. Still, with all the preparation possible, there may be surprises. Be willing to pull out, pull back and give them some room. If you're prepared for the worst, the best will be a blessing. adapted from Positively Aware (formerly TPA News), July, 1990. Based on an article by Chris Clason. reprinted with permission.
Deciding if and when to tell your employer about your HIV status is an extremely important decision. Timing is everything. If you haven't had any HIV-related symptoms or illnesses and are not on medication that is affecting your job performance, there's probably no need to open up that particular can of worms.
If, on the other hand, your illness is interfering with your work such that your job might be in jeopardy, it's time to sit down privately with your boss and reveal your situation. Bring a letter from your doctor explaining the current state of your condition and how it might affect your ability to perform your job. (Keep a copy for yourself.) Let your boss know you want to continue to do your job to the best of your ability, but that because of the effects of your illness or medication, there are times when your schedule or workload may have to be adjusted. Because the law regards a person with HIV or AIDS as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of the job.
Ask your boss to keep your condition confidential, only notifying those people in the company who absolutely have to know. Illinois law requires this of anyone you tell, but many people (employers included) are not aware of their legal obligation. For your own protection, you may want to decide on a non-combative way to make the people you tell aware of this. Again, it's always a good idea to have a few pamphlets or hotline numbers available to help your employer understand your illness and locate resources.
Once you present the facts of your condition to your employer in this manner, you may be protected from job discrimination under the Americans with Disabilities Act (ADA), the Illinois Human Rights Act, and local ordinances. As long as you are able to do the essential functions of your job, your employer cannot legally fire you, demote you, refuse to promote you, or force you to work separately from others on account of your condition. Depending on the state in which you live, your employer may not be able to limit your medical benefits or life insurance coverage. (Remember, it's important to carefully document any communication with your employer or questionable incidents on the job for future reference.)
If you're applying for a job, be aware that under the ADA, prospective employers do not have the right to make inquiries about your health or the existence of a disability prior to a conditional job offer. However, they may inquire if you are aware of any physical limitation that would interfere with your ability to perform the essential job functions.
If you are asked on an employment application or in an interview whether you have HIV, any symptoms of AIDS, or even whether you are associated with anyone else who does, it's best to tell the truth or decline to answer. Although the employer has violated the ADA, you do not want to raise the matter at this time. An employer may not legally refuse to hire you based on your perceived or actual HIV status. If you do not get the job, you may have an easier time proving discrimination if the employer had knowledge of your status. You would also be better protected from on-the-job discrimination if hired.
Employers can request a medical examination only after a conditional offer of employment has been made, and when two other conditions apply: the request can be shown to be job-related, and the same examination is required of all other entering employees of the same classification. All medical information obtained by the employer must be kept confidential.
Keep in mind that you cannot be forced to take an HIV test as a condition for getting or keeping a job. However, many HIV-positive people are also active users of illegal drugs. While the ADA protects you from discrimination based on your HIV status, it does not protect you from discrimination based on drug use. Pre-employment screening for illegal drugs is permitted, and an employer or prospective employer may terminate or refuse to hire you based on drug test results.
After July 26, 1994, all employers with 15 or more employees are subject to the provisions of the ADA. If you feel you have been discriminated against in any employment situation, consult an attorney to determine whether the ADA or any of several anti-discrimination laws apply to your situation.