What is worse: Living off other people or having a preexisting condition?

Kudos to you for not wanting to take the easy way out. I know about preexisting conditions and health insurance. For three years I had to get a private insurance plan for myself since my employer didn't offer any company-provided health car benefits. I paid about $675-$900 a month for a private plan through Blue Cross/Anthem. It sucked and I didn't have as much discretionary money as I would've liked to but it didn't cause me any real hardship.

You're going to have to weigh your options. You can probably get a private insurance plan, but it will cost you. If you can't afford it, SSI may be the better option. It all depends on how much you make.

Unfortunately many people with preexisting conditions are forced to live off others if they want to have health insurance.

In the reality of the work world you can't have it both ways, If you have been allowed under the SSI program for Sickle Cell, you are pretty sick. The other side of that coin is that employers want full time employees, they feel it is more productive and that is what business is about - productivity. I don;t disagree with you that those who are able to work part time should be allowed to, but there are full able bodied people who cannot get work these days. Within the SSI program people are able to work part time, and continue to keep the medical coverage that SSI awards. Have you thought of starting your own business? I can be done, I work with a women who has arthritis, is wheelchair bound and is eligible for SSD, but she works everyday and

now pays into Social Security.

Do I know what it is like to have Sickle Cell, no But I worked for Social Security for years making the medical decisions on SSD/SSI cases and I saw what people are able to do.

You are correct about regulations, but if you haven't filed that case yet, you don't know where it will go. Oh and by the way I have a heart condition that prevents me from working now, but I have figured out ways to survive and rather well at that.

That's got to be hard you've got people that don't know and don't want to understand your situations and their not empathetic or willing to give you any accommodations when it comes to your medical needs and conditions. i would say the next time make it plain and clear what you need for them and talk to some local organizations who fund research and advocacy and community outreach programs on sickle cell anemia

I know from experience, living off of others suck. No one really chooses to live off of SSI legitimately, it's usually something you are nearly forced to do out of neccessity sometimes. It sounds like you could sue your company for discrimination.

From what you describe, you should sue your former employer. They are not allowed to fire someone because of an illness.