Nobody feel awesome for being not able to work for the family. Due to nature of illness we have, continuing job will be the utmost desire that everyone have. Doctors appointments, tests, treatment, dealing emotional and physical symptoms as on its own a full time job that every fibromyalgia patient is doing.
We have asked a question‘ Tell us the secrets most people don’t know about not working due to chronic illness‘ to our community “Living with Fibromyalgia and Chronic Illness“. Hundreds of people participated in discussion and share their thoughts with us. All of them don’t like not able to do work, they want to contribute to the family financially.
So we have compiled their answers for you, as everyone with the fibromyalgia or other chronic illness more or less have same feelings. Also Read These 10 Companies have remote jobs for people with Chronic illnesses or Disabilities
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Here is what community share with us:
1. Brandy Stilson : It’s not fun to just sit at home all day. I would love to be able to have a job. Be able to get up go to work, come home and function every day. Not being able to makes you feel like a failure.
2. Jen Sanchez-Santiago: At least now the condition is recognized imagine being 27 years old with kids and working 13 to 14 hours a day 6 days a week. It wasn’t recognized then and if you said you had a condition they couldn’t find they would put you in a mental place.
So what you have to do is slow me see a therapist the therapist will acknowledge that the stress which is medical stress. Is consuming you in the more you stress the more aggressive your condition becomes which is totally the honest truth.
Once you to establish connection with your therapist and he can put this on paper you can start applying for benefits and if you’ve got work years that helps too I have 15 which then was a quota of 20 now you have to work 40 to make a quota a retirement but, you can get help if the stress integrates your condition and makes it worse and since you are constantly in pain, it also adds to the understanding of how it’s psychologically affecting you your family your body so that you can get a portion of help and maybe a job at home on the phone that’s what I did for a while and I worked all the way up until my breast cancer surgery the day before.
You have to get a ledger diary and write the pain level that you’re in so that you have something to compare it to your therapist and your doctor you also need a good rheumatologist just a good neurologist because they need to keep these in the blood testing it shows when it’s flared up. It’s a lot to deal with but it will help you.
Once you’ve gone through all this process telling your doctor this is what your goals are and telling the therapist you need help. I have to say I needed help for the first time in my life, as a young person then it was so hard No One Believes me. As an older person now. If it exists I will tell the doctor if he doesn’t listen then I’ll move on to someone that will listen. And I found an amazing doctor at the Jefferson Hospital.
Find the level of pain that you can deal with from 1 to 10 my level is 7 but it took 20 years to get there now when I get to eight or nine I have to stop what I’m doing and sit down. But please tell the therapist tell your rheumatologist tell your primary care doctor and set of gold even your insurance will also send someone out to your house to see how you’re functioning and what is going on because that is new in the assistance Philadelphia now sends a case manager to try to meet your needs and help you out. I hope this helps if you have any other questions.
I’ve keep you in prayers and hope that someone can help you and I hope that if you have any other questions the fibro family is here to answer especially the ones that has discs for many many many years
3. Pilar Garofalo : That not working is a huge loss. It’s not only a financial loss, but a loss of identity. I’ve lost a family I had for 15 years, I’ve lost the socialization my job brought me. I’ve lost my confidence, my self esteem, and I’ve lost my purpose.
4. Gemma Martin: People think your lazy… and they think you have it easy…
living jobless on something like disability is HARD its not enough to cover normal bills, your scrounging to make ends meet each month and every month something has to give to make room for things you need… Sometimes your food stamps don’t last the month, you’ll sip meals to make them stretch, some months you huddle on the couch with blankets so you can turn the heat way down because you cant afford the bill, some months you avoid going home at all because you cant afford to run the AC and its much cooler (temperature wise) to wander aimlessly round he stores staring at stuff you cant afford… Your not “Anti social” you just cant afford to hang out…and you shower once a week to save on things like soap/body wash shampoo and the water/heat bill…
You spend every day reading things about how lazy and entitled “welfare queens are” and find yourself getting angry and bitter at the world…and yourself…and some days you even believe it…you believe may be you ARE “just lazy”. Sometimes you get your act together, go for an interview, even get the job..you stick it out for a few weeks and spend every night crying in bed due to pain or late each morning due to chronic fatigue or exhaustion making morning routine hard…
Your boss comments on your unkempt look or the fact you might have skipped the shower that morning (because you knew if you spent the energy on a shower you wouldn’t make it through the whole day, and after a month of killing yourself you are fired for tardiness or absences, or quit because your body cant take anymore and slip into a depression and the cycle starts again… and ALL you want with every fiber of your being…is to be able to do the things that NORMAL people take for granted every day…
- to have a job you feel proud of…
- to play with your kids or pets
- to keep your house tidy…
- to be able to take a shower without your body hurting…or have the energy to put o makeup or do your hair or hang out with friends…
- or make a meal that doesn’t involve a microwave..
The silly simple every day things that you can neither afford mentally, physically or monetarily to do anymore…
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5. Julie Santos:
Who doesn’t want to work and earn? Who wants to be just at home waiting for nothing? Who doesn’t want to pay bills on time? Who doesn’t want to go on long vacation without thinking of finance? Who wants to lose all the benefits in working? Who wants to be LIMITED in all things? Who wants be in pain and not understood?Who wants to be called LAZY when you are actually illed?
Who wants to feel the pain even of doing simple task? WHO WANTS LIFE JUST STOP BECAUSE YOU ARE CHRONICALLY ILLED? And who wants to be scared all the time? So many questions in my mind…but WHO CARES? Because NOBODY WILL WANT TO BE IN OUR SHOES!
6. Teresa Mills: It’s not fun sitting home alone all day everyday, not having the strength to get up an do stuff. In to much pain when you do get out of bed just to walk 5 feet to the bathroom. But atleast I can walk and get up I will never take my abilities for granted again. I’m better than I was 10 years ago but not better enough to go back to work.
7. Nancy Burzo: The loss of a profession you worked so very hard to reach , the friendships from that profession, the social contact from your coworkers with similar interests, the support of those coworkers , the core shaking loss of that identity you held so sacred for decades , loss of the many advancements, achievements you made in said profession, loss of insurance, loss of status as a human being , others no longer see you with value as they did before, obviously loss of income , the downward spiral on your family due to that loss of income and family insurance is cruel and heartbreaking , compounded by having a special needs adult child who is dependent on you.
Seeing the devastation it wreaks in his life , feeling helpless to affect change …….. short list of a few of the impacts …… you rapidly learn who your true friends and family are , you discover resources you didn’t know existed before , you find reserves within yourself that are a peaceful surprise, you treasure the small pleasures again that life offers , you watch your family adjust and change the chafe falls away the true of heart remain and strengthen and mature finding skill sets that strengthen them and it warms your heart …… you become familiar with a new normal , you adjust and accept and forgive and find joy in what is this new life that is now yours , you find a new support system of which this site is a big part ❤??❤
8. Sunday Lynn : I also feel like a total burden to my hubby. Even my 20 year old son said to me “I worry that dad thinks he’s trapped with all your health issues”. Words can’t describe how badly it felt to know my own kid sees me that way.
Another secret (maybe it’s not an actual secret since many of us may feel this way), but my secret is being judged as lazy and as someone who wants the world handed to them. Which is so not the case. I remember working every day, at jobs i loved, with room to grow in each field. But my body over time, has beaten me and i can’t even pick up my house without sitting down to catch my breath and build up strength. Words can’t explain how much I hate living like this and missing out on life. I feel like a failure to my husband, children and society itself, everyday.
9. Jen Gatti: Not being able to work is truly a nightmare, constant pain and memory loss makes each day miserable…you have nothing to look forward to or be proud of. I miss those days more and more.
10. Justine Nagy: I would love to work. I would love to live a remotely normal life. I try my best to live with the cards I am dealt- even my doctor says I am doing everything right. Then why don’t I feel good? I used to work as a retail manager with chronic insomnia sleeping once every 3 or 4 days. Now I sleep and never feel rested, I live on a heat pad, I deal with people invalidating my pain left and right. I am trapped outside looking in. I look normal but I am anything but. People assume I am lazy and need to suck it up.
When people are sick, they call in and rest. No matter how much I rest, I don’t get better. Employers either won’t hire me or once they find out I need so many accommodations they want to get rid of me. I wish I had something else, because they would understand. I hate being that person.
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11. Cheryl Marie: That the pain is debilitating physically, emotionally and spiritually. Constant balance routine. Phone calls are practically non-existent from friends and relatives. I miss the interactions of job and getting paid. I miss having a purpose minus trying to getting out of pain everyday. It is a never ending story and battle. No real big secret!
12. Brittany Grogan : Everyone acts like your so lucky because you don’t have to work. But truth is I loved working
13. Cori Arundale-Daniels: The one I hear from people a lot is but you look good. I had one friend say well since you are not working why don’t I pay you to clean my two story house. Well if I could do that I would have stayed at the bank with insurance 401K all holidays off with pay. A few seem to understand but most don’t and they don’t see me on days when I stay in my pajamas all day and wonder if I can find the strength to take a shower.I miss the simple things like going to an evening movie and out to dinner. I am to exhausted by evening to do anything.
14. Beth Ann Balmer-Linkous: I had someone always say you look fine your working , then one day i had the fibro heat flairs, she complained when she walked by me i was on fire and she better not get sick from me. I walked over an hugged her. I wish i could give this to you, but its not contagious. Now may i snap you with rubberbands so you can sting constantly. Use a hammer so you have a pounding headache most of the day? She hung her head and said no thank you. After that she was nice. Lesson learned.
15. Kelly Hill: My ugly truth.
Through no fault of my husband’s, I feel extremely guilty about spending money. I can’t work, I feel like I don’t contribute. Any time I have to spend money, even on the most necessary things, I feel extremely guilty. I feel like it’s not mine to spend, even though it’s always been “what’s yours is ours, what’s mine is ours.” If it’s household items, it’s not as bad, but if it’s something strictly for me (a $4 bottle of hair dye…) I agonize over it. My anxiety pushes me to the point of even when my Meds are due I don’t want to “waste” money on them. My husband is so selfless, he amazes me. But I still feel bad for wasting his money.
16. Maureen Melo : It makes you feel very inadequate and a burden to your loved ones.
17. Diana Marie Rice : My children think since I don’t work I can be a taxi service for my grandkids and help with all their school work. I love being with them but I quit work because it was too hard for me. Some days I think work was easier. I need to learn how to say no. If I don’t take the they couldn’t go to the great schools they are in. I also care of my 35 year old disabled daughter. I still push myself to my limits every day.
18. Sonia Pearson Harbison: If you are “lucky” enough to get disability, people envy you because you don’t have to work. They don’t understand that you CAN’T work. If you liked your job, you wish you could go back. What people fail to realize is that you probably live in poverty or darned close to it if you got disability and don’t have someone else to help pay the bills. Oh, and people think since you don’t have a job, you’ve got time to do things for them. If you’re part of a group, they want you to help lead things, organize things because you have so much free time. They don’t consider that time isn’t the issue, energy is!
Related: Tips to apply and Win Disability(SSD) for Fibromyalgia
19. Tony- Maria Ward: If anyone asks how i am. I always say i am Okay. Because people are not aware what fibro is they tend to say you’ll be right. Rest up then continue to tell me about there pains pointing out how hard it is for them. Really annoys me i know it is petty. But our pain is forever. It has changed every part of our life. Our pain was not by choice. I have a new normal now and only the fibro warriors can relate. It makes me so angry. I am not competing to see who has more pain. We win hands down all you fibro warriors out there. So yes i avoid that question because i know the answer i get back will upset me. What’s the point.
So yes how are you? I am okay. ?
20. Barbara Miller: My secret to not working is that I don’t socialize so people who haven’t seen me in awhile think I’ve been away working. I only go grocery shopping when I’m not having a horrible day and when I do I am pretty much maxed out on all my meds and even then I can’t wait to get home and crawl into my bed and turn on my electric blanket and bury myself under the covers.
21. Kathy Wiese-Wallace : Because you have a chronic illness and are not working you are not available for your family or friends to dump certain tasks on you because “you are home and do not have to work.” AND just because they cannot ” see” your illness or disability does not mean you well and healthy.
23. Honaleah Marie : The secrets of not working due to chronic illness. Hmmm. Well, first and foremost is the financial strain these diseases have on us. I am 44 years old. I have been diagnosed with fibromyalgia, COPD, PTSD, sleep disorders, have already undergone one complete knee replacement just to name a few things that are wrong with me. According to the federal government, this is not enough to qualify for disability.
I truly loved the career I had, and miss it everyday. I was a go getter… workaholic… a dedicated employee. Now I feel worthless, I am worthless. I have no income, no insurance, and not much left to my name. Selling the possessions I worked so hard for just to be able to get the medications I desperately need to survive. I was the bread winner in our home. Now I’m just a burden to my family. Insurance through the healthcare marketplace for someone like me, with NO income, and a preexisting condition is $600+ a month….
There is no way that is even possible. I can not take my medications as prescribed, because I can not afford to fill them that often… but if I were to stop all together, not only would I suffer with withdrawals like any run of the mill drug addict, but the pain would be too much to bare. You learn to take enough to barely survive. My daily pain ranges from 8 to 10. For every one good day I have, I have two, sometimes three bad days.
On bad days I can sleep up to 22 hours in a day, and even walking to the bathroom is so excruciating that surely ending it all would be so much easier. But… even with the full doses, the pain is still a consistent 5 to 6, and there are all the other issues that come with this hideous disease. My son thinks I’m lazy.. my house looks like nasty, un kept people live here (which is extremely difficult in itself, because I was a very tidy person). There is no such thing as “deep” sleep. If I sleep hard enough to dream once in a year, I consider this to be a miracle. Sleep schedules are inconsistent as well. I have the fibro fog.
I have to write everything down, and what used to come easily, now is a massive undertaking… like balancing a check book. Daily headaches that never stop and range from mildly irritating, to complete migraine. Back pain so intense that I can not stand for longer than five minutes at a time. On the other hand, I can not sit for long either. The only way I can get any relief is lying down on a couch with my back against the back of the couch putting pressure on it, with a heating pad. Stomach issues and pain ALL of the time.
My hair falls out in clumps. The medications have caused me to gain substantial weight. Constant swelling. I can not get around a lot of people, because my immune system is virtually non existent. When I do get sick, I have to go on antibiotics to trick my body into healing itself, because my body attacks my joints as part of the illness. I am isolated, lonely, and suffer with extreme depression. My vision is getting worse by the day. I honestly feel completely crippled. I don’t have a “life” anymore. It was taken from me. Now I just exist. They say that we can not get disability because we are too young, but honestly my body is aged to the likes of a 70 year old.
I’m honestly one step from needing a walker. And truthfully…the suicide rates among people who suffer with this are extremely high. I’ve even considered it myself. But… even if we do get disability, it really will never be enough to pay for all of the medical care we require. This is a sad disease that takes people’s lives away from them. My mind still runs like I am healthy… through the headaches and fog…
My mind wants to get up and go. My body just won’t let me. Doctors need to address this issue very much, because it is a huge part of the depression and anxiety. Either help us feel better, or medicate us so our minds slow down. I hope this helps. Hopefully it gives you insight into the mind and body of a fibro warrior. So, with that being said, I will answer your question the way I have to answer so many times… “I’m fine”. But really…. I’m angry.. sad… I miss my life.
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24 Erin Carroll : I will put it this way I know that I am still capable of working right now, but I also know how useless I’d be. The more I work the more I hurt. The more I work the more tired I am. More pain and exhaustion equal more brain fog and irritability. This all makes it very hard for me to balance out where my spoons need to go.
25. Denise Ruiz: For me it’s humiliating. I can’t take care of myself or my children financially. I believed I was fortunate enough to have been able to stay home with my children when they were growing up, and then became a single mom with no work experience. Now at 45, it’s difficult to get work and if I find something, surgeries, pain and Dr. visits get me my walking papers.
I have a “fiance” that can be a real ass. Always telling me how I can’t do for myself, that I always need help, that I’m weak… I wake up everyday in pain, sometimes crawling to get around. I still do what I have to do. My secret is that I’m embarrassed, humiliated, and sometimes feel completely worthless about not being able to work. I’m hard on myself.
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