They said that starting a relationship would be one of the most difficult parts...
But, for me, it is getting a job that has been the most stressful and difficult so far. You see, this is something my family and I have thought about from the beginning. Can I get a job? Do I have to tell my employer? Is it safe for me to do what I have always done? Do I have an ethical or moral obligation to inform those I work with? Will I face stigma or discrimination? And so on and so on...
A little background for those who don't know me... I am a teacher. I have a Master's Degree in Special Education, and a Bachelor's Degree in Elementary Education. I typically work with children with severe mental and physical disabilities, and children with Autism Spectrum Disorders. My other work history has included extensive nannying and babysitting experience. This is how I paid my way through college.
Well, I have been looking at and applying to jobs for about a month now. I've been looking at a whole range of educational/youth opportunities, HIV/AIDS work, and nanny openings. I was basically just needing and wanting anything to get me back onto my feet again, and to put some purpose back into my life. However, this process has had its own ups and downs.
I went to one interview and awkwardly stumbled my way through avoiding their questions about why I was medically separated from the Peace Corps. After that, I realized I needed to be more prepared ahead of time to answer that question.
As I prepared for my next interview (this time for a nanny job), I struggled to decide what I would tell them. How much would I say? Should I disclose my status? Should I not? I stressed myself out. I cried. I asked the opinions of my family and friends. They all had different opinions...
It seemed that anyone with HIV or working in an HIV organization recommended "No, definitely do not tell them. There is absolutely no reason that you need to tell them, and it could hurt your chances of getting the job if you did."
On the other hand, those who do not have HIV, leaned more towards the, "I really think you should tell them. As parents, they have a right to know who is spending all day with their kids."
Another comment that had been made weeks earlier pounded in my head "I would flip out if I found out that my kids' nanny had HIV!" (This hadn't been meant to hurt me, but it did. It actually had caused me to give up on my job search for a few weeks.)
Interesting enough, those who have been "at risk" for HIV (but ended up not being HIV+) fell somewhere in the middle with their opinions, and suggested I "feel it out, and just decide if I feel comfortable enough with the family to tell them".
I stressed and I stressed and I stressed some more. I didn't want to tell them my HIV status. I didn't think it was necessary. And I did think it could hurt my chances of getting the job. But, at the same time, I felt guilty for "hiding" it or "lying" about it. And I felt bad about having my friends and family thinking that I should have to tell. This has been one of the first times we haven't really all agreed on things.
Finally, I made the decision to go with the advice of HIV+ persons who have been through this, who have dealt with the stress, and stigma, and discrimination in the past. I did not tell. I got the job. I just finished my second day of work.
Do I still feel a little guilty and uneasy? Yes. Do I think I made the right decision for me right now? I hope so...
What do you think?
I certainly think you made the best decision. You are not putting the children at risk and the stigma is too great due to lack of general education. You deserve a life full of purpose and those children deserve a role model like you.
ReplyDeleteOut of curiosity, is there any Federal or State Law that states full disclosure? I don't think there is, but am unsure.
Either way, congrats on your job! Tell them when/if it feels right or necessary. (in my opinion)
As a parent I would want to know for sure.
ReplyDeleteI agree with you, Mara. I would want to know.
DeleteI think the choice is up to you.
ReplyDeleteAs an HIV- parent married to an HIV- man, with two HIV- kids, who is considering adopting one or more HIV+ kids, I'd love to ask your opinion on something that is somewhat related, if you don't mind: We're thinking about being very open about our children's status, and I do have concerns about what the ramifications might be for our kids in terms of bullying, employment, and stigma in general. If we make the decision to be out about their status publicly, especially in the digital age in which we live, we can't take that back once we've been open about it, even if at your age they wish we had kept it private. What are your thoughts?
(By the way, here are our reasons for wanting to be open about their status:
(1) The need for kids with HIV to be adopted.
(2) The misinformation out there concerning the adoption of kids with HIV.
(3) The reality that HIV status isn't something our kids or anyone else should be ashamed of.
(4) A desire to live transparently.)
Hi, thanks for your question. I understand your reasons for wanting to be open about your future children's HIV status. They are valid reasons. However, in my opinion, I would say that it is their choice to make, not yours. Yes, it may be necessary for you to disclose their status to certain people (doctor's, close family members, etc). However, you must remember that no matter how young they may be, they are individuals, and you must respect their individual choice whether to disclose or not. Like you said, at some point, they will grow up, and if you have disclosed their status to everyone already, there is no way to take it back. HIV+ people must all make the difficult decisions to disclose or not to disclose in many different situations in their life. But, that is part of their journey, and their growth. And their decisions must be be respected either way. They may choose not to disclose, and that choice must be accepted and respected.
DeleteMy best advice would be to be open and loving with them, educate them about their condition, talk freely and teach them that it is okay to discuss their questions/concerns/feelings with you, and let them know that it is their decision who to tell, and that you will always love and support them either way.
Good luck!
I think that you've made amazing strides these past few months with coming out publicly about being HIV+. You've been so strong about it and are a great role model, I think you have an amazing story to tell and should continue to tell it. Not telling your employers sort of metaphorically 'puts you back in the closet' in some ways, and I think it's going to continue to stress you out, especially if you grow closer with the family over time. Plus, I think your message is worth sharing, worth knowing not just on a blog but in your local community. I know it's scary but I think you will be able to hold your head up higher because of it, rather than feeling shameful about something that is out of your control. My advice is that you should tell them.
ReplyDeleteI think that this will be a dilemma with each new job you get. I think you probably have to decide on a case by case basis what you want to disclose and to who. I know you will make the right decisions. You are an awesome teacher, and HIV shouldn't stop you from following your passion.
ReplyDeleteLove you
Mom
Right decision, period.
ReplyDeleteI agree. Congrats on your job.
DeleteI agree that telling them might have kept you from getting the job and also think it's your right to share this info when you feel like it. But you do have a public blog on the internet. Have you considered what they might think if they find it?
ReplyDeleteThis was going to be my comment, essentially. I agree that you have no duty to inform your employer, as being babysat by somebody living with HIV is not a risk factor for contracting the virus. But you've been incredibly brave in publishing your story online, and you have to consider the fact that your employer may come across this website.
DeleteYay for finding a job!!!
ReplyDeleteI agree not to disclose your status. Your first priority is being able to support yourself. The stigma and fear is too great, plus, your medical history is not your employers business. I have to admit I agree with Lian above, you have a public blog with your picture on it. One of these days someone will discover it and your status will be public knowledge. Something to think about.
Hi Jess,
ReplyDeleteI have been following your blog and I continue to be in awe and amazed at your openess, courage, strength and most of all your transparency. Early on you talked about living a lie and how much better you felt when everything came to the light. You are who you are, you have nothing to be ashamed of, etc. How are you going to live this lie with this family? What are you going to do if they find your Blog or FB Page and read it? Do you think they will feel betrayed? People are very protective of their kids. I know when I found out I had tons of questions. Once I was educated, I felt much better. You have done a great job educating and as an HIV+ person, you are going to be educating the rest of your life...on your blog, facebook AND face to face. Sometimes its going to be easy, sometimes it's going to be hard. As a parent I would definitely want to know. If anything happened and then you would have to disclose, I think that would be much harder. I believe in disclosure, especially where children are involved. To be honest, I would rather work for someone who knows and hires me anyway. That is true acceptance.
Love, Aunt Sharon
I agree wholeheartedly with Aunt Sharon. It may be more tough to find a family that won't discriminate, but you'll be healthier and happier working for a family under full disclosure.
DeleteAs a parent, I would want to know in case you have a health emergency or (God forbid) get in some kind of accident while at their house. Full disclosure and trust are very important.
I wish you the best of health and success!
It's pretty simple, based on objective scientific facts, i.e., no risk to anyone of transmission, there is no reason to disclose.
ReplyDeletePeople's subjective feelings can be all over the place, and can change according to which direction the wind blows, and you're wasting you time and emotional energy worrying about that.
Just stick with the facts and your own feelings, and stop worrying about pleasing everyone, else you're going to drive yourself crazy.
PS:
DeleteWhere would it stop when it comes to disclosure? Chronic Hep C or Hep B? HPV infection? Herpes? Diabetes, high cholesterol or just an occasional bad case of psoriasis?
It could go on forever and where would it stop. It get's to the point where it becomes ridiculous.
Sadly, people have an emotional reaction to the "stigma" of HIV that is not based on facts or reality.
Just a note on job interviews: why you were medically separated from PC is not your prospective employer's business. In fact, I believe that it is illegal for them to even ask you this question. At most, you can honestly tell them that the issue that caused the separation is resolved. This is true because you were not separated for being HIV+, rather because of your acute illness at the time the decision had to made.
ReplyDeleteAn exception to the above might be your eligibility for employer-sponsored health insurance. You should inform yourself as to the legality of employer wish-to-know vs. your right to privacy under HIPAA and other federal laws. Disclosure should remain under your control.
In the future, when looking for jobs, consider that most public employers (city, county, universities) do not have eligibility or pre-employment physical requirements for their health insurance.
Congratulations on the new job!
As a parent, I would want to know. Truthfully, I would be more concerned after readibg your blog than I was before reading it. I say that only because of how easily you became HIV +. After reading your blog I understand that low risk does not equal no risk and that it is easier to pass on shortly after getting it. It seems highly unlikely that you could pass it on but it was very unlikely that you would get it. Plus kids hurt themselves a lot. Just the other day my son and I headbutted when I went to kiss him and I ended up with his blood in my mouth.
ReplyDeleteI hope this doesn't sound mean, as that is definitely not my intention. maybe I've just misinterpreted things you've written and you can help me understand how there is no risk.
I know though that you will likely be discriminated against and that is just awful. As a diabetic I tell my employers as I don't want any confusion on the importance of making doctors appointments and such. And truthfully, having diabetes does sometimes impact my ability to work (fortunately not often and usually not for long). However, I don't think diabetics suffer the same kind of discrimination, if any at all.
I do agree with others in that I think you will have a hard time keeping it secret (both emotionally and practically given yiur blog). Good luck and thank you for all that you've shared.
I would have to disagree regarding risk anonymous. She had sex with a guy who she didn't much about, which is a major risk. Her actions were not low risk. Comparing that to watching children is like comparing apples to oranges.
DeleteI'm kind of torn on telling a potential employer vs not telling them. There is definitely a stigma attached to HIV, and so people will discriminate against you no matter what. However, I like to be honest and to work with people who accept me for me. With that said, I might try to find work with HIV infected children - but ultimately I think you should follow your heart. As someone who has such a large blog following, you could write a book on your experience and earn income that way or lead an education program on HIV prevention in your community. There are so many other 'think out of the box' ways to earn money and with that you can take a really bad experience and use it as a gift to propel you foward, educating many more than you would have done in a traditional classroom setting.
I was wondering if you were aware of this article: http://articles.chicagotribune.com/2011-10-06/news/ct-met-hiv-teacher-suit-1006-20111006_1_hiv-positive-cps-headquarters-hiv-status
ReplyDeleteI see no reason why you cannot go and get a teaching job. Now whether you can find one or not may be a whole different story. I really appreciate your story. I have been in healthcare for a long time, and no one has had the courage to give the details of their experience prior to diagnosis. I hope that you pursue something in healthcare policy or healthcare education. Have you looked at getting a Master's in Public Health. That way you have options to work for a GPO, and your experience can help others.
Good Luck!
Why would you have a moral or ethical obligation to disclose? If they ask about your medical leave of absence, smile and say that medical records are confidential, and that your condition will not affect your job performance. It's not something that comes up in everyday conversation, so why would you need to volunteer medical information about yourself?
ReplyDeletehttp://nogoingback-thereisonlyforward.blogspot.com/2011/12/i-have-nothing-to-be-ashamed-of.html
ReplyDeleteIf the linked post is true, then disclose. There is no reason NOT to disclose your status to a parent/school board unless you are doing it to protect only yourself. It is potentially harmful to others, especially if you are working with children who would not know or understand the importance of avoiding others' blood.
If I have learned anything about your beliefs from your blog, it is that you believe you can help inform others about the true risk of HIV, and educate in how to interact with HIV+ people. If you actually believe that you're moving forward, then take this opportunity to find a way your unique status can help others.
Thank you all for your opinions. It is truly helpful to see the diversity of opinions and responses here. A few responses I have after reading:
ReplyDelete- I do not feel that choosing not to disclose is like "putting myself back in the closet". I agree, yes, that I have made huge strides in the past few months in accepting and disclosing my status on such a grand scale. Many HIV+ people will never do this for their entire life. And that is totally fine. We are all different people, and we will all encounter different situations in life. Our choice to disclose or not to disclose in each situation is totally our own, and whatever we choose, is OKAY. Just because I choose to disclose to 1 person, or to 1,000, does not mean that I have to disclose to everyone.
- I agree that employer's should not ask about medical history/conditions, but the fact is that they do, and it creates for an awkward conversation and interview.
- I do not feel that I am putting children that I work with at risk. If I have the knowledge and ability to act in a safe manner and take necessary precautions, then there is no reason that they would be at risk. Have you ever thought to ask if your children's school teacher's are HIV+? Or (as GB mentioned) if they may have hepatitis, herpes, or other medical conditions? No, it is not your business.
- Finally, I am well aware of the risks I have taken in creating a public blog, and if someone were to find it that I did not not want to, I would have to deal with the consequences of that. However, I have also taken certain precautions to keep my identity somewhat limited and therefore lower the risks of current or future employers finding my blog.
I think you made the right decision not to disclose, but I'm sad for a society where that's clearly in your best interest. Furthermore, I'm a bit annoyed (okay, appalled) by the concept of 'I'm a parent and I'd want to know...Discrimination is bad.' Why else does someone need to know other than to discriminate and make assumptions about your character? While you have nothing to be ashamed of, you also have to eat and I don't think it's unfair of you to not want to be a walking poster child for people living with HIV every minute of your life. As I'm sure you experienced in Zambia, it can be exhausting to be the only [adjective] person in a community. You deserve the right to take a break from that and just be Jessica whenever you want.
ReplyDelete-a fellow RPCV Jessica from Florida
PS. I've been following this blog for a while now and just want to add my voice to chorus in awe of your bravery in going public with this, particularly so soon after you were infected.
PPS. Kudos to the anonymous above for exploring adoption of HIV+ children - you're going to be brilliant parents and excellent role models, and those kids are lucky to have you. I'd agree, however, that their status belongs to them and they deserve the choice of when, how, and who to disclose to. You can model transparency and acceptance in your lives without having to use their illness as an example.
Jess I agree with your post completely. Especially regarding the status of children-should they choose to disclose if/when they are old enough that should be their choice, even minors have a right to medical privacy.
DeleteJessica, have you thought about applying for services through your State Vocational Rehabilitation office? They can possibly help you with job placement as well as counseling regarding sticky interview questions.
ReplyDelete"I really think you should tell them. As parents, they have a right to know who is spending all day with their kids."
ReplyDelete"As a parent, I would want to know. Truthfully, I would be more concerned after readibg your blog than I was before reading it. I say that only because of how easily you became HIV +."
.....do you expect to be having sexual encounters of any kind on the job? Absolutely not. This strikes me as the kind of witch hunt attitude that was so prevalent in the '80s and '90s.
Your doctors were shocked you were infected with HIV. That's because the probability is so rare as to be negligible in this case. There seem to be a lot of people who are forgetting that part of it.
There are a lot of people with very serious long term diseases such as Hepatitis that they could just as (or more) easily transmit to kids. But because it does not have the scary, ghastly drama of HIV, our society does not expect disclosure.
Disclose if you want to.
The point on the 2nd quote is that passing it on as a nanny is highly unlikely, but Jessica getting it the way she did was highly unlikely. Just reiterating Jessica's point that low risk does not equal no risk. Was not at all implying that sex would be involved. The point in your second paragraph is exactly the point being made in the second quote. And I think parents would ask about diseases like hepatitis if they could and could rely on an honest answer and not get in trouble. Many Parents would do anything to protect their kids from anything that causes them pain. If HIV did not cause pain than this blog wouldn't exist. Are parents overreacting? Yes, I'm sure. But that is not unique to trying to protect them from HIV. Do I feel bad for Jessica? Absolutely. Do I think she deserves to be discriminated against? Of course not. But I'm still a protective mother who has to work hard to not be overprotective. I worry about my kids shoes being too tight so of course I would worry about this. I also dint understand the tie to a witch hunt. Not out searching for Hiv people by any means.
DeleteThank you for exploring this topic, it really shows how much fear and stigma still surrounds HIV and how it is transmitted. I believe that you have absolutely no obligation to report your status. The only exception might be if you were working in the medical field with patients. I admittedly don't know the law for medical practitioners but this is the only reasonable field that I could see there being a disclosure issue.
ReplyDeleteWhile I understand the fear that parents have around HIV I agree with many of the other comments that ask, what don't you know about those who are already around your children? You don't ask a daycare provider or school teacher about their health when interviewing for a job so why would you ask a babysitter?
While your blog is public I don't think you have to feel ashamed or worried that someone will find it and get upset for nondisclosure. Should anyone come across the blog then being up front and honest about it is one thing but advertising it is quite another.
I know I am essentially repeating what a lot of other commenters have mentioned but I just wanted to let you know that someone else supports your INDIVIDUAL choice. Good luck and I wish you the best in the job market!
Jessica,
ReplyDeleteOnce I was diagnosed with polycystic ovarian syndrome (whose symptoms can include massive weight gain, facial hair, acne, etc), I thought I would try to raise awareness of the disease, which affects up to 10% of American women. Although I'm one of the "slim" women with PCOS, the facial hair that I grew before I was diagnosed completely freaked me out and led me through one of those prolonged who-I-am-at-my-core existential crises of confidence. I was in grad school at the time and really thought my future was imperiled by being a hairy, infertile woman.
In telling people that I had PCOS, though, I discovered that the disclosure often had little merit -- they were surprised that I would tell them (especially if we weren't close friends), they wondered what my motivation for telling them was, they didn't know what to do with the information.
I've since ceased being so open, not because I don't mind people knowing but because I've found that broad disclosure doesn't advance my real agenda of promoting *women's* awareness of PCOS. My real audience should be women who may have PCOS but don't realize it.
By the same token, I don't see much to gain (for you or for parents or for potential employers) of knowing your status since they will *not* be better protected from HIV as a result of knowing, you will presumably be more likely to experience prejudice (even if it's subconscious), and they may feel burdened with the knowledge.
I am wondering from a legal point of view -- even if your employer found out you had HIV from this blog or elsewhere (because I'd love for your blog to become so popular you could live off the income of being a speaker on HIV awareness), could they fire you at that point without breaking discrimination laws?
Good luck with this journey -- frankly, it's an exciting one! With your HIV under control, there is so, so much potential for you to have an impact in breaking down stereotypes about the disease. I'd think your background in education means you already have the tools and experience to effectively reach communities/audiences with your message.