Tuesday, September 1, 2009

Experiencing and Recognizing Loss -Disability



Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.

Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about.

Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.

No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us.
We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process.

I'd love to hear from you, about your losses. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com

37 comments:

  1. Great post! Very valuable information. Thank you for sharing.

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  2. Great information and trust me...this pain is no joke. I am in pain about 98% of the time.

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  3. Please let me know if I can help in any way.

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  4. i have recently been given a preliminary diagnosis of TN which has been a great relief to at least know theres a name to this condition i have been suffering from. my first visit with a neurologist is in 2 weeks. im gunna try to get disability cause somedays are so bad all i can do is lay in bed, swallow handfulls of pills and cry cause the pain wont go away.

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    1. Can you tell me how are you going to get disability, which is the first step. Pls help me i i have been dealing with TN for 6 yrs.

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  5. Best of luck with your efforts to get disability. The pain is debilitating. I'm sorry you are suffering. Please take good care of yourself.

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  6. Disability benefit hadn't crossed my mind until I realised that every walk, every conversation in work, missing work and lectures at university became a problem. I have suffered with this disorder for five years now, as a result of facial surgery. I am 24. I am outgoing, and I have cared for my mother throughout my childhood, and cannot bring myself to contemplate disability as an option for me. As you say - guilt perhaps.

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  7. I'm sorry you have been suffering so long. I am hoping you will feel better. Thanks for your feedback.

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  8. If I apply for disability and they say I don't qualify I will feel like a failure in life again. My life ended as I knew it when tn hit. How do you explain that if you take your meds you can keep the pain at a manageable level but the drugs control your mind. They make it impossible to do your job because of word finding problems, forgetfulness. Spaced out and sleepy. I talk myself right out of trying to get it. I retired early because I could not do my job. Now I can't afford insurance. So frustrated....what to do?

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  9. In my opinion, anyone who is surviving TN (and YOU are), is succeeding. Most people with TN do not get approved first try. I think you've done an excellent job explaining how the medications affect you. Insurance is an issue. Once people are accepted for disability they can get Medicare, but you aren't that far along in the process. Sometimes communities have resources for individuals who have medical conditions. Options vary from county to county, state to state. I am wishing you the best. Don't give up.

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  10. Thanks for writing this. I am a laid off teacher and I have TN. I LOVE teaching and am trying to find another job. I teach Special Education of Moderate to Severe Disabilities. The last year that I taught was very hard. The loud noises would rally trigger it for me. Of course, the added stress that comes with teaching was def. not a help. I ended up missing more than the amount of sick days I had and ended up getting my paycheck docked for it. I am scared that I will not be able to handle it if I do go back. I am 28 years old. I feel like no one understands what I am going through and how scary it is.

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    1. Wow, someone else who is so young with TN. I'm 28 as well, I got TN right before my 22nd birthday.

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    2. I loved teaching also, Kimberly, and I miss it terribly. You're right: unless you've had it, a person can't understand the fear or the pain.

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  11. I agree with you, Kimberly, about the added stress that comes with teaching. Teachers have to be "on" every moment, and it's impossible with TN. I found myself in the same situation as you, running out of sick days. I understand what you are dealing with. It's tough. Let me know how if I can help.

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  12. All I can say is yes I do feel like I have failed everyone around mme. Now the question is I work in a assisted living facility. will I be able to remain at my job or am I finished with my career. some thing I enjoy. will this effect the ones I am helping. was diagnossed with this 3 weeks ago and now on meds I do what I can and yet I feel like I am working in circles and nothing is getting done in my home. My husband is mad at me I tell Him I am not feeling well he told me to fake it. what kind of crap is that.

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  13. I was diagnossed with TN 4 weeks ago I feel my life is coming to a end with my hosband and my job. I work with the elderly. will I be able to continue to do this is there any jobs out there for us with TN please help me. I am scared. not to mention I feel like I have let everyone down.

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  14. I am hoping that you will be able to stay in your job because to give up one's livelihood is a loss. I gave up teaching. Years later, I gave up my job at TNA, The Facial Pain Association. It wasn't easy. And I have also been where you are, shouldering not only the pain but also a spouse's anger about it. Things got better, though, and he became more understanding. It took a while. I am saying a prayer that your health and circumstances surrounding it will improve. Thanks for sharing with me. It means a lot.

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  15. Every state has a vocational rehabilitation office. They can help you find work. Usually the people who work there have no idea what trigeminal neuralgia is, so be prepared to explain what it is and how it affects you. There is also something called the Job Accommodation Network that specializes in helping people stay in their current positions. You have a medical issue that is covered under the Americans with Disabilities Act. It affords you some protection. Take good care.

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    1. I tried to comment, but it doesn't seem to be working... or it's gonna post 5 times. Anyway, wow.. thanks for writing this. I just stumbled upon this post while I was searching for information about disability and TN. I was lying on the floor using my phone, but couldn't comment from it... I wanted to comment and bookmark this page so badly, that I actually got up and went to my PC. Not much motivates me to get off the floor as I'm sure you can relate too, with the whole TN mess. I'm crying reading this post. I've been turned down by SSDI twice and I finally had a hearing on 8/23/2012. Delaware is a difficult place to be awarded SSDI and I'm terrified right now. I've been told that if you meet certain criteria, that you qualify and the judge can't deny you... I just hope this is true. I've lost everything I own. I've had help paying for my medical needs, but that's coming to an end too. I'm not even sure what I'm trying to say here, I'm just scared.

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    2. I was terminated from my job , because of extended absenses and this awful illness. I have ATN and now being tested for TMJ, My job was very physical and 12 hour shifts for 3 days straight. was so intense I just could not do it , I have applied for disability and as you said it just made me feel guilty, and usless, How do you get the Social
      Security people to understand , I thought they are supposed to be on top of dehabilliting illnesses.

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    3. Unfortunately, lack of awareness about trigeminal neuralgia is widespread in the disability community. It is frustrating to have the worst pain known to humans, especially when there seems to be nowhere to turn for help. It sounds as though your duties were demanding. I am wondering if you were eligible for protection under the Americans with Disabilities Act or Family Medical Leave Act. I am hoping that your pain will ease and that your vocational issues will be solved as well. Thanks for stopping by my blog.

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  16. Lilystcyr,

    I understand being scared, and you are not alone. Dealing with TN and disability issues that surround is a frightening process. It is sometimes difficult to get SSDI for invisible illnesses, but it is not impossible. I am saying a prayer that things will work out in your favor.

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  17. Thank you for your post and inspire others to talk about TN .. I have been working at my law firm for over 26 years and have been suffering with facial pain for over 5 yrs and taking meds. Difficult keeping up with my work because of the meds but no one understands how difficult it is on a daily basis dealing with facial pain and trying to deal with daily chores and work. some days it hurts to even talk. Seems so unfair that this condition is not considered for disability. I would not wish this condition on anyone .. its been very depressing especially dealing with people who act like its no big deal, if they only knew. Its like a tazer gun putting electricity to your face and constant facial pain has been so depressing to deal with everyday task and just trying to smile when all you want to do is cry. I pray for everyone with this condition .. God bless you all and wishing you luck with disability benefits.

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    1. No one is immune to facial pain regardless of our educational level or income. It is not uncommon for someone who has the condition to be approved for disability benefits, but with Social Security, it is a long haul. The pain is real and dealing with it is exhausting. I wish you the best.

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  18. I am 38 an ast. store manager who has just been diagnosed with tn . I'm scared i am going to lose my job . And then i would lose my house . important on a med that helps greatly with the pain but it leaves me " loop , spaced out and really messed up " so u am told .i can tell you how its effecting my job because my boss has told me " i need you to have a clear head . can't you not take it . i rather you be in pain . i need you to be able to run the store you can't all messed up ". I have to say i understand where the boss is coming from at the same time i really don't have to tell you what the pain is like.HOW do you hold down a job , not lose your sanity and your life with this.my spouse is trying to be supportive but at the same time is freaking out and really does not understand the full extent how this effects me ." its please don't get fired. we will lose everything" . i am really trying to deal with all of this and with what is going on with me . everyone wants me back to normal honestly i would love not to wake up feeling like i just got punched in the face with a baseball bat and that's the mild pain. important lost on this. i need help. advice . someone who's been here. my life feels like its been turned up side down. please can someone help me. i don't know.how to make them understand.

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    1. I am sorry for your pain. Holding down a job is difficult. You have protection under the Americans with Disabilities Act (ADA). You can also go through the Fed's Job Accommodation Network to get help. Last night I checked, they know almost nothing about TN, but I will consult with them on your behalf. I will also help you with the ADA if you like. You can go back to my website and find a link for my email. The medications typically settle down, but at first they make concentration difficult. Unless someone has had TN, he or she will probably not understand. I know what you are going through. Please email me. I care.

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  19. Thank you Kathy, I stumbled on this site today and found that there are others like me. I am a 47 year old professional woman. I have been in the medical field and my career since I was 16, I have beat Cancer two times. I was diagnosed in 2004 with "Trigeminal Nueralgia"... I have struggles with and excepted that it is real. I have fought my way through years of torture. Many drugs, to no avail, and finally concluded that I would forever be a druggy. I am a Libra and have a very strong mental capacity. I always over come whatever is thrown my way. However, this will be my demise. I have recently had a severe relapse and been told that my career will be over if I have to cut back on hours. If you can believe it I have been working more that 48 hours a week on narcotics and hiding it. Now the meds arent working. I had lost everything once and now looks like that could happen again. I cant rebuild. I dont have the life left in me to do it. Im not suicidal YET... But, I have to stop, I just cant fight it anymore...What do you do at this point??? I just remarried 3 months ago and that is failling. Even yhough he is a wonderful man and would do everything for me. This has just put me to my knees. As of now, I go to work drugged, come home and go to bed, just so I have it in me to get up and do it again. But, as you know, the pain takes a toll on the body, mind and soul.....I pray everyday that GOD will either make things better for me here or just take me......

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    1. Dear Linda,

      I am so sorry to learn of your plight. I understand what it is like to feel as though you are losing the battle. Please do not give up.

      Careers can be modified or rebuilt. The issue with that is losing what one has and the security and self-satisfaction that it brings. I have stopped to pray for you, and I sense the incredible stress with which you are dealing.

      The Job Accommodation Network (via the Division of Labor) is commissioned with helping everyone who has a disability make adjustments so they can keep their jobs.

      You are a strong woman, indeed, and I am asking the Lord to infuse you with more strength.

      Hold onto love and hope. My email is on my website. It's withgreatmercy at yahoo dot com. Contact me if you like. In the meantime, you will be in my prayers, Linda. God bless you.

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  20. I really relate to the article and to everybody on here. I'm 29 and have had 5 episodes that last more than 2 weeks at a time. I'm currently in my 6th episode and am pregnant. Just the other day I was diagnosed with TN. Since I am pregnant, I had to force myself to eat and drink. Not eating and drinking is not an option because of the effect it will have on my baby. I never knew I had it in me to just power through the unbearable pain. But I did it. While eating though the burning electric shock pain would shoot up and down my face but would wear off as long as I kept my jaw moving. The moment I quit chewing, the pain would return. Its amazing what you'll do to protect someone you love. By far it was the hardest thing I've ever had to do. I am in so much pain right now that if I move the wrong way, it hurts. Walking, talking, well you all know. And nobody but us and the people who actually take the time to research our condition will ever understand. I feel alone a lot of the time when TN hits because nobody around me takes the time to read what its really about. Its so frustrating. That's why I like message boards, so I can find ppl who relate. After I give birth 2-12-16, I will be looking into an MVD procedure, the most invasive type of surgery for TN but one of the most successful. I pray to God that will help me be pain free since I have a little one on the way. Being a parent, there is no days off.

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  21. I'm am truly at a loss for words. Im in tears right now because I to have been dealing with TN for 8yrs now and I've been through the disability process as well, fortunately I was approved but everything you just described from beginning to end is so on point. I felt alone. I still hate to this very day having to explain what this is to people who will never ever truly know how it affects my who life. Everything I've done in the work field was medical an I was in college working towards a nursing degree when it all crumbled. I loss so much that I will never get back. No one knows my true pain an how I really feel as a woman, mother I feel as if I failed my kids an I didn't ask for this.

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    1. Latasha, I am sorry you are experiencing such terrible pain. Please let me assure you that you have not failed your children. You did not choose to be ill. It's not your fault. I am confident that you will get better. I know what it is like to lose your vocation, something you worked so hard for. It's why I became a rehabilitation counselor. I knew I couldn't be the only person with this type of loss. I will say a prayer for you and would love to be in touch with you. You can send me an email at the address provided on this page. You aren't alone. I promise.

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  22. So, I have both Occipital Neuralgia and Trigeminal Neuralgia. I've been suffering from ON since 2013 and TN since the end of last year. I applied for disability last year and was denied. Along with these two debilitating illnesses I also suffer from depression and vertigo. I was told that I was denied because I was able to somewhat think clearly. I lost my job a year ago, and am unable to work because of the pain. I taught in early childcare at the time and I was deemed a liability because of the fact that I ended up having to leave early because of the pain or had really bad bouts of vertigo. I am still unable to work (my neurologist even wrote a letter) and I am now trying again for disability. I live in NC and I know that it is tougher here to be approved the first go round of applying for disability here, but to be told that I could not get it because I could somewhat think clearly. That was absolutely insane. Most days I can't think clearly, I'm scared to drive, I can't go outside for more than about 10 minutes at a time, and yet I'm not disabled in anyway. Sorry for the rant. I'm just really tired of living like this. Tired of being scared to go outside, tired of going out with friends. I hate that my mother-in-law and my mother have had to help with the finances because we don't have enough money to cover our bills. But most of all, I'm tired of being in pain and people thinking that it is just a headache, not understanding that this is a whole lot more than that. That it is a life altering illness that just won't go away. Again, I am very sorry for the rant.

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    1. First of all, I do not consider your post as a rant. As an English teacher, I appreciate your carefully written sharing of your experience. And as a rehabilitation counselor, I understand how difficult it is to be approved for disability if one has facial pain. Please do not give up. It is okay to have good days and to be able to think clearly sometimes. But the bottom line is this: are you employable? Can people count on you to be there and be able to do a job? Many people cannot meet a schedule. That's what employers want, someone who can work 40 hours a week or more. Let me know if I can help. I have an email.

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  23. I lost my job basically because no one believed something was wrong! They couldn't see it so what could be so bad? I couldn't lift my head off my pillow somedays. And to describe the pain to the disability people I told them drop 25 concrete blocks on your face and that just begins the pain level! My life has been broken but won't let it beat me! Your article is something I wish I saw years ago but glad those that now are diagnosed can read! Thank you for taking the time to write it! And many all with this affliction finbd a little peace!

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    1. I wish you had seen this years ago too, if you would have found it helpful. Thank you for stopping by my blog. I'm sorry you lost your job: it's happened to so many people. Most of all, I believe you about your pain. Hope you are feeling better.

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  24. I just turned 39 last month and I was finally diagnosed with TN in February of this year. I've been in pain since November of 2015. I thought it was my wisdom tooth but, I was cleared by a dentist and an oral surgeon. The oral surgeon was the one that told me about TN. I researched it and went to the ER the next day. There I was diagnosed with TN. I was fired from my medical billing job. My supervisors did not believe me about my TN. I was talking in the office very little and I always talked with my jaw locked. They thought I was disrespecting them. I am currently on 1200mg of carbamezaprine a day. I still have pains every once in a while. But I can't drive, I'm groggy all the time and I sleep most of the day. I can't help it. I try not too but I do. I have a 7 & 4 year old boys and I struggle to be able to help them with their homework.
    I live in Florida and I'm thinking about applying for disability. Will it be difficult here? How do I go about doing it?
    I lost my apartment and all my stuff is in storage that my helps to pay for. I am so ashamed to say that I'm living with my little sister in her 1 bedroom apartment. I sleep in the living room with my 2 boys on a mattress. It's embarrassing. I've lost all friends and most family members don't believe my illness and make fun of my sleepiness. They call me lazy and a bad mom. I honestly tried to stab my face with a kitchen knife once. I can't deal with the pain. I feel like a failure to my kids and I need money ASAP!

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    1. Maria, I am sorry that you are suffering. I understand what you are going through. I was 41 when trigeminal neuralgia struck me. Applying for disability isn't easy, but I encourage you to do it because you are ill and need assistance. That is what it is designed for. Unfortunately, being young and having a rare disorder makes it more difficult to get the benefits. Most people in Florida (who have TN) are turned down twice and then meet with a Social Security judge. There are many people who will provide you with emotional support and feedback as you go through this process. You also have some reprisal under the Americans with Disabilities Act as far as being fired from your job goes. You can email me at withgreatmercy at yahoo dot come. I will help you all I can. God bless you.

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