Social Security Disability

anonymous

New member
Just a topic for discussion.. I know that some people with CF look well on the outside, but it's the opposite situation going on in the inside. For those of you on SSDI, is it difficult for others around you or even new people you meet to understand why you're on SSDI. What kind of response do you get from others? Are they critical of you being on SSDI. It seems many people don't quite understand CF. It also gets old always having to explain your health situation. When you meet new people, one of the first things you get asked is "what do you do for a living". How do you respond to those kind of questions?

Female w/cf
 

anonymous

New member
Hi,
Good topic! This is something I struggle with constantly, being on SSDI and looking perfectly healthy. Often times I am not up front about being on SSDI, I am married with a child, so it is a bit more "acceptable" (at least that is what other people think) that I am at home and people see that as the reason rather than my health. My son is now 15 and people often ask me when I am going back to work... If it is someone I am close with and they know about my cf I explain to them that I will probably never go back to work, that I have impaired lung function even though I look fine and that my job is to take care of myself, do treatments etc. I try to explain how time consuming all the treatments are and that often even though I look fine I don't feel fine and need to rest etc. If it is someone I am not close with or don't care to explain all that to I make a joke and say I am a woman of leisure who has a sugar daddy or something to that effect. I have a hard time in social situations, that seems to be one of the first things people ask when you meet someone new... what do you do for a living? Often I will reply that I am a retired nurse and try to steer the topic back to them. It is too much to go into with someone I am just meeting. I am fairly private about my cf so only a handful of people know I am on SSDI. Those who I have told are supportive of it. I guess everyone handles it in a different way.

Kim
40 w/cf
 

Emily65Roses

New member
I'm a college student still, so when people ask me, I don't have any issue explaining it away. "Do you have a job?" "No, I'm a student" and it ends there. When I do get there, I imagine I'll just tell them I'm on SSI. I'm always up-front about it, and if they question it, I will use the old "looks can be deceiving" and tell them I have a lung disease. If they question it further *politely* I will happily answer. If they give me attitude, I won't bother with them, except to tell them to piss off. That's generally how I go about it.

I got harassed at a bar last weekend. I was hacking outside because I had to walk through smoke to get outside (everyone was, of course, right outside the door). So I sat up on some steps by the street and hacked for a while. Then I hear drunk male morons down by the door (smoking away) say "Sounds like she's coughing up a furball, better call 911, har har har" with their imbecilic stupid drunk-man-laugh. I got up immediately, walked down there and said (except I didn't censor myself) "Do you have an effing problem?" and they just looked at me. I asked them twice more if they had an effing problem, and they continued to stare. I then said "I have a genetic lung disease, is that okay with you?" and then, thankfully, my Mike showed up to take me home. As I got in the car, my friend Caite was talking to them, "You don't know what the hell you're talking about, and if you did, you'd feel like (poop)."

I don't know why I just shared that, but I had to. Haha. Basically, if people are polite, they can ask me whatever they want. and I'll answer it happily. If they are rude, they get quite a big attitude out of such a little girl, along with a potty mouth that I don't bother to censor when talking to ignorant jackasses.
 

anonymous

New member
Thanks for your replies/input.

Kim, I'm a lot like you. I only explain to very close people. I have explained in the past to other people that I'm just fairly close to and I've even heard well if you try harder you could work full-time. That sure makes you feel like a failure. They couldn't get it because I looked well, or maybe it just bothered them personally, I'm not sure. I'm also a person who tries very hard in life and do not want to constantly dwell on my health especially when I'm out to socialize for fun. That only makes me feel worse. Many people seem to become an expert when this topic comes up. All their advice without really knowing the whole situation, then get trapped into feeling like your constantly explaining yourself.

Emily, I sometimes wish I could be strong and more assertive they way you are. I get tired of being more on the passive/guilty feeling side of things.

Take care,

Female w/cf
 

spicyone18

New member
I am 22 and have been on SSDI for 2 years or more. I have always hated when meeting new ppl cause they ask "do you work" or whatever. I babysit alot so that is always my first response. I guess I am generally quiet about my CF aswell. The families that I babysit for do know that I have CF and support me in anyway they can.
 

JazzysMom

New member
My responses vary according to my mood & how I am feeling. I have shouted at people that I have a life shortening respiratory illness that I was born with & others I have politely told that I am a Domestic Goddess.
 

anonymous

New member
Hi Anon,
No, I don't have medicaid because my husband's income is too high, but I do have medicare. You are eligible for medicare 2 years after you have been on SSDI. I also purchase a supplemental BC/BS insurance plan and have excellent coverage between the medicare and supplemental. I have a small copay for meds ($15 brand name $2 generic) and everything else is covered 100%.

Kim
40 w/cf
 

Mockingbird

New member
Ha ha. When they ask what you do for a living, say "I have cystic fibrosis for a living, you damn idiot!" ha ha ha! That would be hilarious. Of course, they probably wouldn't find it funny, and it probably wouldn't help anything, but I'd laugh.
 
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