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Guilty for being a burden?
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JDkingston posted:
Something I live with is guilt-for being dependent upon my spouse and family for support. I had to retire a couple years back because, along with the fibro fog, pain, memory blips, fatigue I also began having almost daily migraines-status migraines that do not have 'triggers' so could come at any time and last any where from 3-6 days (typically 5). I just could not be reliable on the job any more. We tried telecommuting but the still needed me to be able to give them days they could count on and I could not give them that. So, I retired at age 52-far from social security age.

While I grieved the loss of identity that came from my career I also faced, for the first time, having to be dependent upon someone else for my life. I have always been fiercely independent and no I feel that I am 'living off' my husband. I have such a difficult time coping with this feeling. I know he loves me, I know I am lucky to have my family but I feel so worthless not being able to contribute to our livelihood. Every day I search for some type of at home position-so at least I'm trying and will not give up on that.

Has anyone else felt this bad? Sometimes I feel like they would be better off without me-I just feel like such a burden. I have a teen daughter and grown children so I'm not going anywhere but the feelings of despair exist and I just don't know how other people cope with this feeling of being financially/physically dependent. It would help if I knew that I'm not the only one who has such a difficult time coping emotionally with the changes.

thanks.
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xperky responded:
I had to face those feelings many years ago. I became very depressed about it. Please seek help if that happens. You are understandably grieving a loss of part of yourself. I found a great therapist who talked me through it all.

Soon after I became disabled from work (at 30) I filed for Social Security Disability. It took a couple tries, but then I qualified. It helps make ends meet and allows for Medicare Health Insurance too. It's not a lot but it does help me feel better and cope better financially.

I recommend you file for that benefit immediately. It sounds like you gave work your best effort but simply cannot do it as required. It's OK! These things happen and we cannot know why. We need to accept it somehow, and work on the the things we can do.

Hugs to you.
With Compassion,
Margaret
 
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Randm2220 responded:
I am facing the same feelings. I had to leave my job in march of this year for the same reasons. Having been the bread winner for over 10 years while my husband battled a medical condition my ego took a hit. I too feel like a burden. I am currently drawing unemployment while I wait for social security disability to make a decision. Did I say I am only 46? It has been tough emotionally. I do see a couselor who has helped me quite a bit. But still, the feeling have a tendency to sneak in there quite a bit. I know how to fend them off now. Talking to my DH helps too. He always reassures me that he loves having me home all the time and that he doesn't mind the financial struggle as all as I am feeling better. Working a full time job with fibro was not for me. I am only good pain wise until around noon. Then I need to put my feet up. Mind wise was a struggle all the time for me.

There are a lot of us out there who are going or have gone through what you are feeling. It is part of coping with fibro. Being a stay home is a job in itself. Also, remember that you spent quite a few years taking care of others now it is your turn. Being part of a family that cares and understands is a wonderful thing. That helps with the process your mind is adjusting to.

I hope you find encouragement in these posts. Know you are not alone and if you need to talk we are here for you. If you need more I can send you my email address and we can talk more.

Hugs!

Kim
 
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Alix1972 responded:
I have to concurr with Xperky about applying for Social Security Benefits. And yes, they LOVE to turn you down, sometimes, several times in fact, before approving your disability but this IS a disability. I had the same problem with the migraines as well (And by the way, If you didn't read my long, rambling rant/answer to another person's question, if your headaches are starting at the back of your head - which with Fibro, they probablly are - you are having Fibromyalgia Headaches, not Migraines) HOWEVER, Good News!!! Migraine Medications Work!! (At least for me!) Immitrex (Not sure on the spelling) even has a generic out now because it's been out on the market for so long. And, when you qualify for Disability, you should qualify for Medicare as well which will pay most of your Rx costs. There's also Treximet which is newer. It's just the Immitrex with extra Naproxen Sodium (Aleve) in with it so, if you get the generic immitrex and it doesn't quite do it, take a few naproxen. If you do manage to get really good health insurance, say though your husband's work coverage, then see if a physician will prescribe (And the insurance will pay for) Savella. It's one of only 3 medications approved (So far) to treat Fibro. At the time I tried it, I expected my BODY pain and my unbelievable fatigue to ease up. I didn't notice that it helped with that. But I noticed that I didn't have a SINGE Migraine the entire time I was on it. Every doctor I mentioned that to told me that I was crazy and that I didn't know what I was talking about because Savella isn't a Migraine medication. Well, turns out, Years later, they finally list "Fibromyalgia Headaches" as a 'symptom' of Fibromyalgia. It wasn't a symptom back then.
Yes, I often feel the helplessness and frustration. I'm a full-time Student and disabled and a single mom to an 11 year old - at the age of 40. I never know when I wake up in the morning if it's going to be too much for me just to make the 45 minute drive to campus much alone go to classes all day, study, do homework, take exams, cook dinner, clean the house, do laundry, spend time with my child, and on and on... I never know when I won't be albe to sleep for 3 days straight or when I won't be able to stay awake no matter WHAT i do. I can't make plans in advance because I don't know how I'll feel that far down the line.
Yes, some days, I get SO despondant that I think MAYBE my daughter would be better off with someone else and NOT seeing me like this - when I'm having a bad Fibro day; when I can't get out of the bed; when I have to tell her she has to hug me gently, I hurt; when I'm short tempered because every inch of me is exhausted and in pain - how fair is THAT to an 11 year old of a single parent?? But how fair is it to leave her?
So, I'm in school, working on a degree and trying to stay optimistic that once I graduate, I'll be able to get a job in the Field I already have experience in, that I'm good at, and maybe, with understanding, there will be a way to work out a schedule AND in the meantime, I'm working on trying to find a way to cope with my stress, depression, and pain in natural ways instead of popping pills for the pain. (BUT, I DO take anti-depressants and I do see my regular MD and my mental health MD regularly - who know each other and approve medications mutually and I comply with treatment - AND I see a therapist/social worker). The first step is the Depression. I *PROMISE* You - It makes EVERYTHING 1,000 times worse than it REALLY is. So, one step at a time. Get your depression under control FIRST. Work on that. It's a really HARD step, probably the hardest, but the most needed one and the one that will make the most difference. And remember that people are HERE (And There) For you.
Good Luck
Best Wishes,
Alix
 
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booch007 responded:
Good morning,

These are the saddest of the posts we read I think, that and uncontrolled pain with a bad doctor fit.

The fight from within is so hard to overcome....the find of the new you and accepting that this is all you can accomplish now is the hardest. I have been lucky to chip forward and regain some of me back and fight to hold a bit of who I was, but the low is still there.

I hope Dr Margaret chimes in here for you. I don't know how you add a trick or tool for this. It is balance within you and self esteem , that value is present no matter what the level of function. My kids I think are happy just to sit and hear some *wisdom from MOM when things are bad.

DS was just so sick with food poisoning, he wanted me right by his side......this was good (as he pushes away so much in his his life.)

I know I didn't add much here, but knowing you are not alone and we all fight the feelings of loss of identity to deal with. BIG.

Keep sharing, dump it all here, we listen so well. 24/7 we are......

((((Hugs)))) from me. I wish I could think of better wods this morning. Take care and do something good for you today. Nancy B
 
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Anon_2912 responded:
Have you tried talking to a thearapist...

They can do wonders for your mind. No shame in trying one.
 
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Anon_10089 replied to Anon_2912's response:
Hello-

I think many of us have gone through similar feelings. It sounds like you have a supportive husband so maybe talk to him about this. Maybe he gets joy out of supporting you and helping you to feel better. I'm sure he'd much rather have you around than not.

I've had to deal with similar feelings and I'm only 30. Although I work part-time, my husband's job is what really pays the bills. It is scary for me sometimes to realize that I rely so heavily on another person. But my husband has expressed that he's glad to provide enough so that I can rest when I need to. I also try to do things for him, like make all his meals. If I was working full-time, there's no way I'd be doing that.

I think your issue is one of those things that takes time to work through. I hope you can find peace in this matter someday!
 
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ggladieux replied to Anon_10089's response:
Acceptance of your condition is a difficult challenge, but it is worth the fight. I am only 42 and have been unable to work for the past year and a half. Since I've always been so independent, even with the Fibromyalgia, this is a big blow to my self-esteem. I still carry a good amount of anger of my condition and the limits it has placed on me, so I redirect my anger into something positive, I make and sell jewelry. Perhaps you can find something you enjoy doing and try to sell some of your projects, it won't be a magical fix, but maybe it will help you redirect your frustration to something positive. The important thing is not to give up, when life gives you lemons make lemonade.
 
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MandyCake responded:
Since I was 18 I have dealt with a multitude of health issues and specialists. Breathing issues I was told was Asthma, then not, then is, then COPD, I have had Pneumonia 4 months this year and continue to have respiratory infections and now they are uncertain. Allergies, told I have many, then none (though I will rash and swell and have trouble breathing) and again uncertain but I have chronic sinusitis, roschea and ezema. Heart. Told I had a mitral valve prolapse then all clear. EKG's are all abnormal with some reading Ischema, Anterior Infarction, neurocardiogenic syncopy as I have severe vertigo with passing out. My chest xray showed an enlarged heart, then normal. MRI's/CT Scans and blood work showed and I was told Lupus... 10 years later they changed this to MS, now, They say it is Fibromyalgia with OsteoArthritis. I looked 9 months PG and was told there was nothing wrong. Not even a month later I had to have a total Hysterectomy as my insides went necrotic damaging part of my colon and bladder thanks to very large tumors. 3 years ago at the age of 42, I became disabled. I'm in the process of undergoing all tests, bloodwork, scans, etc yet again. (It's yearly) and I'm certain they will continue to be inconsistant. I feel as if I am crazy although I do see a therapist and she tells me I'm not. I do not have family or others I can lean on and my quality of life, in my eyes, is worthless. Frustrated, yes, emotional difficulty accepting the changes, yes. Life on Social Security barley covers rent, basic living expenses. Walking is a challenge, breathing is a challenge. Pain is constant. I feel as if I am a burden to society and just a guinia pig to the medical world. I'm 45 and I feel as if my life has been wasted and I question what I have to look forward to. More years of watching myself further decline?
 
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LMT55 responded:
JDkingston you are not alone. I am 56 & have had fibro for over 30 years. For me the symptoms started at 23 but I was not diagnosed for 3 years. I also am a very independent person and I hated myself and thought I was a burden on the family. The stress got so bad that I started having severe anxiety and couldnt even walk out of my house for almost 3 months. At the time I had small children so it was a hard time. The fog, memory blips, pain, depression & fatigue suck but Im sure that your family understands. This is part of the disease. The migraines can be brought on by the stress your having. I understand everything your going through believe me. You are a strong person and your family would be lost without you so please dont feel that they would be better off without you. I know this is difficult for you but please ubderstand your not alone. Physically try hot empsom salt baths, meditation, and massage, those have really helped me. A change in diet has also helped. Emotionally, I have found going to a therapist and talking with other people who also suffer from this disease also helps. Financially, you are not worthless!!! You have had a rough diseased thrown at you. This is out of your control. Take a deep breathe. Can you take something you like to do and turn it into a small at home business. Whatever you did before, can you make a change and go into another career even if its at home? If you were corporate, can you do consulting? I wish I could take your pain away and again please know you are not alone. I am sending hugs your way.
 
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MandyCake replied to LMT55's response:
LMT55 is correct. You ARE NOT worthless, just as I am discovering that I am not. We have a purpose and I see this now. Perhaps our illnesses provide others with lessons on compassion, caring, understanding. Being an enigma to the medical world, we are helping others in future generations as new treatments, etc are discovered. People kept asking me, what have you always wanted to do, what did you enjoy about your career, I was always helping others and now I was helping them by allowing them to take care of me. I struggle, boy do I struggle... And only recently in the past few days has this new light of hope and meaning given me reasons to not give in and not give up. Even in our illnesses we are helping others. So please, please, please don't give up.
 
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rudyandirmouse responded:
JDkingston, Hi Linda R here and know this: your are not alone with those feelings your are now having. We have all gone through a grieving process, felt depressed after getting the fibro DX. It's hard to hear that your life will never be as you had once known it. I am sure that every single one of us has at one time or another felt those feelings because we no longer can be the busy, getting it done and being the "go to people " we had been.

I felt as you did over 30 years ago. I was in collage, busy, active and beyond happy. Then I started to feel flu like and run down. And over a period of 2 years I was sidelined and in bed sick with this, that and this and that again. I lost time in collage, lost 6 months of my life to deep depression and for the most part just wanted to die if this feeling sick all the time was going to be my life.

Looking back on it all now I just want to kick myself for letting those feelings rob me of days I could have been doing life my way. UGH. So after months of feeling sorry for myself collage friends made me get up, get back into collage classes and activities and get my life back on track. It took a few days of dragging myself thru classes again, but I realized that this collection of ills wasn't going to kill me, just slow me down.

Fibro's collection of illnesses picks us up and puts us on the sidelines so often with migraines, body aches, flu like symptoms, fibro fog and fatigue,IBS. etc It makes us feel that we need to be dependant on others for help to get our day done, because we're in bed or not feeling well so often. Not fair I know. But as I learned it doesn't have to be like that!! It may take you a bit of time to get passed these feelings, make some daily adjustments. But you will be amazed at yourself when you set these feelings aside and get on with your life.


In just no time at all you can take back your independence and become, in many ways, pace and pace some more, that busy person again by just not letting "IT" plan your day. YOU CAN WORK THRU A FIBRO FLARE DAY IF YOU JUST TAKE IT EASY, take medications and treatments, AND ADJUT YOUR DAY TO THE THINGS YOU CAN DO. You need not stay in bed or feel helpless. You don't need others to do things for you. Yes your in bed, yes you feel terrible, but: You can work around any one of the fibro symptoms with medication and taking the day slower. If you let "IT" you'd be in bed 24-7. You'd never get up, you'd never do anything except have those feelings of helpless and worthless. Those of us here in the FMily chose not to let "IT" have even on second of our day no matter how ill it tries to make us feel.

This is a mean and nasty collection of medical conditions no doubt about it and I know so well how they can make one feel like death warmed over, but none of the medical conditions will kill you or rob you of your life, unless of course you let "IT". I don't choose to let it.
I say this because all those years ago I thought about it and realized I didn't want "IT" to take my life away from me.. so I took it back. I had and have many, many ' slow " days that I struggle thru, but what matters is that I am up and doing the day my way. I do small things on fibro flare days and get the bigger things done the next day.


So these many years later I have completed collage, gotten 2 degrees, have 3 children, 6 grand children and have a good and happy life. I did it my way and even with the worst of fibro symptoms, IBS for me being the worst, I still enjoy my life and "IT" hasn't robbed me again of one second of my life, my way.

Have a good day, one you made your won. Feel better and post often.

Gentle hugs, Linda R.
 
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angelswife responded:
Hi JD,
I have been there myself, and I understand...I was dxed with Fibro in 2010 and didn't want to accept it. I have learned, though, that I can still have a beautiful life---it is just different from what I had before Fibro.

I am dealing with this again, now...I broke my leg and ankle in mid-April and have had to rely on Husband for everything. We lost my income; plus Husband was laid off for the summer, so we have really been struggling. I have my own landscaping business and am now faced with giving it up; because it is going to take a long time (18-24 months) to completely heal.

It is okay and right to grieve the person you were before Fibro. It can feel like we have lost everything that defined us. The challenge lies in not allowing ourselves to be defined by the Fibro, and to create a life that fills us in spite of it. It can be done---I promise you that. Everyone here is living proof.

Please keep coming---lean on us for support whenever you need to. We have all been where you are and we understand.
((((HUGS))))
 
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crazytaurenswife responded:
  • hugs* I know what you mean. I met my husband online several years ago, and my boys and I immigrated to Canada to be with him. The plan had always been for me to find a job once I got up here, but my pain got to the point where I couldn't just ignore it and push through. I was diagnosed with FM about 9 months or so after our residency was approved. Since then, I've only been able to work an hour a day supervising kids during lunchtime during the school year. Some days I can't even manage that. I feel so guilty sometimes for putting all this pressure on my husband. He did so much to get us up here and instead of a partner who was able to provide additional support for our family, he ended up with another dependent. Lately, I even need help undressing.

    I know he doesn't feel this way and that I shouldn't, either, but I still do at times. So no, you are most definitely NOT the only one feeling this way.

    ~air hugs~

    ~Jessi
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    Angellinda74 responded:
    I'm so sorry for what you are going through. I've had severe life robbing Migraines for over 32 Years! After the birth of my first child. I never felt well again. But I tried to be the best wife, mother, friend I could ever be! Then in 2010 I got Triple Negative Breast Cancer! My dear husband had already lost his job. So he took the sign, his job was getting me Well. I thought How Can I fight This aggressive Cancer without money? Well here we are its now 3 1/2 Years since my husband lost his Job. We have Zero income! I feel like I was tortured and left to die! I have side effects I never knew they'd be this Disabling!!! Cancer/ Chemo/ Radiation Etc.. And a poor diet and little if any relief! We're living on Love & a Prayer! When we were young. My husband helped me located my Bio mom. Whom I was stolen from. So at 19 & pregnant we found her in time to see her Dying from Breast Cancer! She never shared if I had a dad or family. I didn't share she'd be a grandmother. She was just 46. I had that one short, emotional visit. But my husband saw her Dying look on my Face. So he begged me to live! Since we were together ever since we met one Christmas Eve when he was 18 & I was16. We have this long lifetime of Love! I do so feel like s burden! I exist in head to toe, endless, nonstop pain, neuropathy,prickling-painful- hot flashes, I drop things, can't walk much Etc.. I can't afford needful med and all of my side effects. Its horrible! We sure have something in common. When I last saw my oncologist he mentioned fibro. symptoms as he hurried out the door. No one can fix this. we have Zero income! there's no jobs here for my husband and I'm stressed to no end! Too many people have such hardships, pains and problems galore. You can't and should not feel like a burden. This wasn't anything you did. Just like I didn't do anything to get this way. I never smoked, drank, did drugs or anything! I was thin and the pix. of health. I appreciated and cared for my body. But it turned on me with TNB Cancer! I know I'm no picnic to live with. But as mad as I make my husband. He says he wouldn't have it any other way. When biweekly Chemo had me down for 12 out of 14 days I was Weak. Then I had Weekly Chemo. He is Happy I'm alive and have the strength to bitch or Yell. I wish you all the best! I wish you comfort, relief, healing and the help you need. You were born to be alive. I hope you get the best of Care!! I care & Wish you well. Please don't give up!! You have our Best well wishes!!


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