Meds, Mind, Body & Benefits > Insurance, Benefits Programs & HIV

What do you think?


Hello all I was diagnosed with HIV October 16, 2012 age 23 I filed for SSI benefits because of my trips to the bathroom are every 15 minutes and I experience a lot of fatigue, dizziness and a bad loss of appetite. I keep reading a bunch of people are getting denied for benefits and I believe mine will, because I'm young. Mine seem more of like side effects and a suppressed immune system although blood work shows differently I'm going through hell with the disease, body aches, headaches you name it and I'm more than likely already in some sort of pain.

This thread should probably be moved to LIVING WITH HIV as it has nothing to do with insurance/benefits. I'll notify the mods about moving this ;)

however as to your issues, have you discussed any of this with your doctor?!?!? There are a variety of things you and your health care partners can do to alleviate your problems. Few people have to live with HIV like you are doing here in 2013. I see two options to discuss with your doctor.

1) ways to alleviate the side effects. Although you don't mention which meds you are taking (or what your lab results are), cleary your meds are giving you several bad side effects. But side effects can often be dealt with. Immodium (taken as another daily medication) can be a god-send for those with GI issues.

2) changing to another regimen. This isn't 1995 and there are a lot of different regimens of drugs you can take in the battle against HIV. Switch to something else that won't give you these bad side effects. You may need to change meds a couple times over the next year (cause it's going to take a couple months with each regimen to work through the initial side effects and find out which one you can handle that is effective against your HIV) to get the best combo. Any doctor worth their salt should be more than happy and willing to help get you onto a regimen that you and your body can tolerate.

You don't need SSI, you need to either get a way to combat those side effects, or get onto a different regimen without those side effects. Call your doctor's office first thing next week and schedule an appointment to talk with your doctor about these problems. Don't delay because you don't need to be living this way.

Jeff G:
I agree that getting on SSI benefits should be a solution of last resorts but if the OP thinks he needs to go on disability then he should get a fair hearing .

From what little we have heard from him I think it my be premature to declare him fit for work without learning more about his needs both physically and mentally . I'm inclined to leave this here in this forum for the time being to see if the OP is asking for advice on applying for disability or benefits or if he is open to discussing managing his symptoms so he can go back to work .   

Welcome to the forum.
It would probably help forum members to give you some advice and refernces if we had some context for your HIV infection.

You were diagnosed in 2012, but any idea how long you have had it?

Do you have any blood numbers to report?

Are you taking HIV medicine?

The body's system can be all crazy during the seroconversion, and for some months afterwards.

The body's system can take awhile to adjust to medication, but we don't even know if you are on medication....

SSI benefits are usually awarded to people who have had HIV a very long time, many opportunistic infections, maybe have at one point received an AIDs diagnosis, have not completely rebuilt their health, despite medication, etc. 

All of this is a mystery in your case....

Hey New,

Social Security benefoits are calculated from your earnings in YOUR BEST 10 YEARS WORKING and you say you are 23, you don't have 10 years working.  Your benefit amount will not be enough to live on and as we have seen in the first 2 years of the Obama Administration, there is not always a cost of living increase.  It is a guaranteed hard life.

You can use this time to complete some college work and making you a more valuable employee and later, if you need Social Security, you will have 10 working years behind you.  Get some Fall Semester Handbooks and start looking at ways to live your life around the HIV.   8)  Have the best day


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