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TOPIC TITLE: Invisible?
Created On 12/30/10 8:34 PM
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Posts: 39
Joined: Oct 2009

12/30/10 8:34 PM
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I have an undiagnosed health condition that causes me to be inconstant pain and often feet very weak. When I get on the subway, there are some days when I feel like I'll collapse if I don't sit, but there are often no seats available. Since I look fine and don't have a name for what I'm feeling, who's going to give their seat to the healthy-looking teenaged girl on the train?

It isn't fair. I'm a firm believer in being able to handle what Hashem hands to us, and I never ask Him why He's done this to me, no matter how bad it gets, but sometimes I wonder if people realize that not everyone who looks healthy is. I mean, they surely can't tell that I'd rather be curled up on my bed, moaning in pain and discomfort, but even if they could, would they treat me more sensitively? Probably not. I look to healthy.

I have what I call an "invisible" disability. It's very much present, but even doctors aren't willing to admit that there's anything there because I look fine and can force myself to function through it, no matter how bad it gets. There are some days when every single step is a fight to keep going, but I still walk to school. There are some days when I want to scream in pain, but I still smile and laugh like everyone else. In some ways, this is good because I don't let myself get caught up in whatever this is, but in other ways, it's really bad because everyone treats me the same as everyone else, but I'm not. I do need the disability seats on the bus, even if I don't show it. I AM in pain about 90% of the time, even if you can't see it. Disabilities can and sometimes are invisible. How can I get people to see that? Because even my own family doesn't understand.

Smile; it's what your mouth is there for
I have the short-term memory of a carrot
The early bird catches the worm, but the second mouse gets the cheese in the trap

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Posts: 12
Joined: Mar 2012

3/20/12 2:38 AM
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FreeSpirited, I don't know if you check back to Frum Support anymore.. your post is almost a year and a half ago, and I hope that you were able to find help for your suffering, and im yirtzeh Hashem aren't suffering at all anymore. I really wish that I would've found this site earlier, so that I could tell you that you aren't alone.

While my pain is from a spinal injury that occurred nearly 10 years ago (broke my back), it happened when I was 21. Baruch Hashem I have full motion of my limbs, and I had titanium hardware surgically implanted where one of my discs use to be, to keep the broken vertebrae from harming my spinal chord. However, to this day, I still have horrible nerve pain in my back and legs. And like you, even though I'm now 31, I still look way too young to need any special consideration. I empathize with you because I also have good days and bad days. Days where I literally can't sit in chair and lie in bed in agony for hours on end, and also days where I am still in pain, but look like a fully functional person.

It actually shames me to say it, but the problem that you describe actually caused me to start walking around with a cane, even on days when I could've done without. Unfortunately, I wasn't as strong as you are to continue to live in pain without showing it. The judgement on the faces of people, when I would tell them that I only work part-time, or learn part-time, was more than I was able to take.

You should realize that you are a very strong person for not allowing others to change how you might behave, even though it might be easier. I always have had self-confidence problems, and after my injury, it just got worse. People regularly ask you "what do you do?", to which often my reply was "nothing...I have a spinal injury" or "I learn a bit but I can't hold a regular job because of the pain in my back and legs". And the immediate look on almost everybody I talked to's face, told me that they didn't believe me. It said "You liar! Stop being lazy!" on everyone's forehead.

Even some of the people who were more deliberate in judgement, they would ask "well, is there anything that can be done?" or "what did the doctors do for you?", when I explained that they put me on pain medication, suddenly I was a junky in their eyes.

It actually happened once right after I had had the major fusion surgery where they stabilized my spine that I described before, that I went to the pharmacy while still in a wheelchair because I couldnt yet walk, to fill prescriptions, and the pharmacist flat out called me a liar and refused to fill the prescriptions, even threatening to throw them away. He made a huge scene in front of a bunch of people who were waiting for their medications.. My luck, the one day the pharmacy is packed, is the time that the pharmacist decides to make a scene and treat me like a regular junky. I told him to call my doctor if he didn't believe me, and that I would call the police if he tore up my prescriptions since doctors are very reluctant to write multiple prescriptions of those nature just because you have a story about a self-righteous pharmacist tearing them up, and thankfully I did get them back. But he still refused to fill them and I had to wheel myself to a different pharmacy several blocks away. As it happened, the other pharmacist eventually came to steal part of my prescription several months later and denied it when I called from home (convenient right? who will believe the young guy claiming the pharmacist stole his opiate pain medication?). I actually saw this other pharmacist on the news a few years later, he had been arrested for selling opiate pain medications on the black market. He was of course denying it and was telling the reporter how effective opiates are for patients who have had spinal injuries. I mamish felt like he was talking about me. Needless to say he's not a pharmacist anymore and he went to prison for a while.

But it really is amazing how people will rush to judgement about someone just because they don't fit their criteria of what a disabled person should look like. I feel horrible for you about even your own family not understanding. I also went through this for a long time. My own mother believed that I was faking a broken back until I brought her to one of my doctor appointments. She said "please help me understand, I've experienced sciatica pain before..", to which the doctor cut her off saying "okay imagine that pain times 10, in both legs and in the back". She was finally on my side after that. But it still hurts that even she wouldn't believe me, and left me with not much confidence in the rest of humanity to understand, if she wasn't able to.

Your situation sounds worse because you still don't have a doctor on your side, from what it sounds like. And I know it can be difficult to find a dr who will believe you when they can't find anything wrong. My advice would be to demand every test under the sun that could possibly explain what you are suffering from. And if your doctor treats you like he doesn't believe you, drop him/her right away. No patient deserves to have their credibility scrutinized just because the doctor isn't able to figure it out. And if the doctor is doubting your word already, they aren't putting all of their effort into actually finding what's wrong. I can't remember who said it but someone said that every doctor should have to be shot in the leg or something before being able to practice. Otherwise, it's likely they will lack compassion, or they won't put all of their energy into actually helping the patient. I was lucky to find a doctor who also suffered from a spinal disability. He's always gone above and beyond to help me.

Idk if you will even read this, but could you describe your pain a bit more? Like is it everywhere? Is it in the legs only? Is it stabbing pain? or burning pain? or aching? Is there numbness? Is it in the muscle, or does it feel like the pain is deeper where the bone is? There are many conditions that cause pain. Pain is our main indicator that Hashem gave us that something isn't right. I'm not a doctor, but after 10 years in hospitals and pain centers I have learned a lot.

You should have refuah sheleima, hopefully you already have. Kol tov and hatzlacha

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