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Terrified at work
Aug 23, 2004

I am a 42 year old computer consultant recently diagnosed as HIV positive and on meds. Prior to my diagnosis I had an OI in my eyes which left me with two collapsed vitreouses and terrible floaters. Needless to say looking at a computer screen is pure hell. In an attempt to salvage my life five weeks ago I had a vitrectomy on my right eye to remove the floaters. The operation was painful (nothing like a couple of needles in the eye) and I still do not have decent vision. After my diagnosis I had a mental collapse but outside of a week off to recover from the vitrectomy I have remained on the job. The meds have been goosestepping across my gastro-intestinal track so just being awake is not too fun. Add to the mix, that my is both stressful and requires 100 percent travel. No one at work has a clue that I am positive and it has to remain that way. Of course, the enormous cost of the meds and doctors drive me to keep my job but at this point I am a real "wounded duck". I checked the HIV short and long term disability policies at work and unless I am on death's doorstep I qualify for neither. My conservative southern state has run out of ADAP money so unless I can shell out 1000 bucks per month should I lose my job I will be taking a financially-imposed drug holiday. At this point, I feel that I am completely checkmated by HIV. Any suggestions outside of leaping off a bridge would be greatly appreciated.

Response from Ms. Breuer

Short term disability leave, Family and Medical Leave Act--these were created for people in situations like yours. They aren't treats to be handed out by benevolent employers when they feel like it. One is an existing benefit at your place of work. The other is the law.

You work at a computer all day. Your job is 100% travel. Your eyes were damaged by an operation. The stress plus the surgery plus the difficult recovery-while-working could threaten your vision.

When do you become important enough to get some rest and care?

Please obtain a written note from your health care provider explaining that a recovery period from your surgery is mandatory for the sake of your vision. Make an appointment with the head of HR at your company, turn in the note and explain that you're there to schedule the leave--immediately. Insist that you're not much good to them if you can't see. Do not back down. This is not something you should have to beg for.

If you get pushback, please contact your local AIDS service organization and ask for a referral to an attorney who works with people with HIV. One carefully-worded letter from your attorney to your employer should be enough to settle the question of whether you need recovery time from this surgery. One letter. I've seen it work many times. I'm not asking you to sue anyone--I almost never recommend that as a solution to employees of the workplace equivalent of Attila the Hun. But clearly you're not going to enjoy any rights you don't stand up for.

At no point in this process do you have to say anything about underlying diagnosis.

And please, one more thing: your letter makes it abundantly clear that you are feeling overwhelmed, which is understandable. Please, please take those feelings to a counselor/case manager/social worker/mental health clinician at your local AIDS service organization. Your mental health is just as precious as your eyesight. There is no reason for you to go through all of this alone, whatever your background may tell you about toughing out stuff like this. And you'll be doing someone else a favor. Those case workers/social workers etc are so oriented to helping people that they just about break out into hives when one day goes by without their helping someone!

Leaping reservations on the bridges are all taken. So get thee to a service center and start using the services they are designed to offer you! You're not checkmated yet.

I hope you'll write back and tell me how you're doing.



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