When I was a kid and my symptoms first started, a lot of people said that it was all in my head. Doctors, nurses, teachers, friends, and family all expressed doubts at one point or another. My mother was the only one who never doubted me. I heard it so much that even I started to wonder myself.
After 11 years of symptoms, it was a relief to finally have a blood test as proof. “Look world, it’s not in my head, it’s a real thing!”
Now I’m fighting the same fight again. Only this time, instead of saying the pain isn’t real, people are saying it isn’t bad enough. I keep wondering, how sick is sick enough? What’s the limit? What’s the definition? My boss clearly didn’t think I was too sick to work. Or maybe that was just wishful thinking on her part. The long term disability insurance folks have said that they don’t think I’m too sick to work. I’ve been spending months preparing the materials, bit by bit, to prove otherwise. Now, I just found out that the MassHealth folks (our state medicaid system) also don’t think I’m too sick to work. Now I have to figure out how to prove otherwise to them, too. Of course, I’m expecting to get denied by the SSDI folks, since almost everyone is denied on their first try. I just applied, but I’m pretty sure I’ll have to work on an appeal. I got dumped by a doctor who’s tired of dealing with my expensive tests and extensive paperwork, and who was unwilling to state for the record that I’m too sick to work (even though he said it off the record many times.) He told me to have another doctor do it.
Being this sick is the worst thing in my life. Being unable to work is demoralizing and scary. So what’s happening? Instead of focusing on the positive parts of my life and trying to work through this crap, I’m forced to focus on the worst parts of this crap and explain and define it over and over again for all of the doubters. I’m forced to examine and then reexamine the most negative parts of my life and lay them bare for strangers to judge me. And they certainly do judge me.
I’m not the first person to go through this and I won’t be the last. But at this moment, I may be the most irritated. I just want to yell at all of those idiots, “If you don’t think I’m sick enough, then just how sick do you think I need to be? How sick is sick enough? How sick would you have to be to not be able to do your job? How sick would your kid/parent/sibling/best friend need to be to not be able to work?” Not that I think it would do any good. I’m just tired of being judged.
I completely understand your frustration and I’ve wanted to to yell that at people before… I haven’t filed for disability although I’ve been considering it. From everything I’ve heard, it’s really difficult and degrading. Best of luck! 😦
“Degrading” is a very appropriate word. I wish I’d thought to use that when I was writing this. It’s a lousy process, but hopefully it’ll be worth it in the end. I’m going to keep going with the belief that it’ll be worth it – I’ll let you know.
They say you shouldn’t wish anything on anybody else but I sometimes wonder if all the people concerned with making decisions on our health would just experience how we feel for an hour or so, maybe their decisions would be different. I hate how we have to fight to prove how sick we are. Isn’t it enough that we are ill – we have to fill in reems of forms and be poked and prodded by strangers, just so we can get money to survive on. Don’t they think we would be a work if we could? I have taught for twenty years it breaks my heart that I can’t.
I support you fully and wish that there was something more proactive I could do.
Thanks so much for the support, Lorna. I feel the same way you do. I know we’re not “supposed” to, but I also wish that these people could get really ill for just a short time, a couple of days, so they could understand how horrible it is, physically, mentally, and emotionally. Yes, there are people who take advantage of the system, but don’t they realize that most of us wish we didn’t need the system at all? I’m so sorry to hear that you had to give up teaching. I have great respect for teachers. You’re so compassionate – I’m sure you were great at it.
I know that feel. I want to punch your doctor in the face, what a jerk! I find that my family is definitely the hardest to convince, and I know what you mean about being doubted so much that you start to doubt it. I was told that my pain was just menstrual cramps for years and years. Growing up I actually believed ALL women were in intense pain all the time!
Heh, I actually laughed out loud at this! I was with friends when I read it and I tried to explain it to them, but they just didn’t get it, not really. I’m glad you realize now that your pain is NOT “normal” so that you can address it. We have enough doubts of our own, we really don’t need to add others’ doubts too!