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Saillea

700d

So I'm wondering... for those who's illnesses keep them from working... do you get a lot of trouble from your own family/friends about it? You all can check my stats and see how many different disabling conditions I have if you're curious. I've tried repeatedly to rejoin the work force and have been hauled off in an ambulance from my last three jobs. I can't even get an interview anymore but there are family members who think that my bachelor's degree must make all the difference in the world and accuse me of not trying. Let's forget that my drs have flat told me to absolutely NOT return to work in my condition but it's so hurtful to have it thrown in your face all the time. Thoughts? Comments? Ideas? I'd love to hear 'em.

Top reply
    • Sleak67

      691d

      No thank goodness. I need full time caregiver and my family has been very supportive. Hugs

    • Sleak67

      691d

      No thank goodness. I need full time caregiver and my family has been very supportive. Hugs

    • Hannah_6

      693d

      My dad has a similar problem where his health and body make it to where he is at risk for another stroke if he works again. He stays home to take care of my little brother when he was better. It's a rough subject as it normally leads to meltdowns if I talk about. Welcome to talk to me if you want ,it might help.

      • 1ofmany

        693d

        @Hannah_6 that was a very sweet post I have quite a few children and one of my daughters is around your age and I do worry about how my deterioration is going to affect them because I watched my mother's father die from complications from the same issues that I have and unfortunately it wasn't very pretty but on a good note he was a much smaller man than I. In 2013 I was 5'9 220 lb of muscle due to the work I did and now I'm in my high 170s so I still got a good bit of me to go or at least that is the way I see it. And I'm so thankful for my beautiful daughter introducing me to this app because when I see that abbreviation I just think of apples and not the apples that everybody buys today 😁

    • 1ofmany

      694d

      People can be so mean I hope that there's enough people in your life that keep you positive I had to listen to people tell me I was lazy just didn't want to work I've given up on life and I kept telling them no something's wrong with me so I don't know if it's fortunate or unfortunate but now anyone that doubts my issues all they have to do is look at me and if they're blind to what they see I do not waste my time I hope your family and friends come around to having a little bit of compassion for you I do know that it can be lonely and very frustrating🙏

      • Saillea

        692d

        @1ofmany I'm sorry you were treated that way. I think I should clarify...my family is very supportive and loving. A couple of them just don't understand what it is to be sick all the time. The comments are coming from a place of love because they're genuinely trying to help but they have no understanding of just how sick I truly am or what it does to me when I try to work. If they were saying these things to be critical or mean I absolutely wouldn't have anything to do with them. I just don't know how to help them grasp the seriousness of my conditions.

        • 1ofmany

          692d

          @Saillea I understand and I'm certainly happy to see that there are people in your life that are loving and compassionate and supportive that is so important so I'm sure in time they will definitely understand the seriousness and things weren't so bad for me cuz I am pretty tough I've been dealing with my conditions long enough now that I worry more about how I affect them rather than how it's all affected me🤗

    • coolsciencechic

      694d

      I remove toxic peoplefrommy life. That includes family. I don'thave the energy to deal with ignorance.

    • Roxi7039

      696d

      i tried several times with a disability lawyer and they said they were gonna take it federal to get it granted, nope not at all instead I got a packet in the mail that was my case file and haven't tried a 5th time now.

      • Saillea

        695d

        @Roxi7039 I'm sorry to hear it. I remember when my dad got his pacemaker in his early 40's and he was a professional truck driver so that was career ending. He went through the same thing. Poor man nearly lost everything before he sued the company (for another injury). Now he's 70 and living from disability and retirement and barely making it.

    • AranaJ

      697d

      I live with my ex, he and I are each other's family since both his parents and mine are dead now. He is extremely supportive of me

    • Teaberry

      697d

      I relate to you... It caused me to shit EVERYONE out and focus on me and my spiritual path just gets lonely and I was known in the past for letting the wrong ones in so I stopped letting ANYONE in. It's just me, my birds and my dog.

    • BonnBonn

      698d

      I used to. I do supervise my nephews while my brother works and that had gotten them to stop. Occasionally I’m still asked about it but things have worsened in the past year and a half to the point that I don’t think anyone will anymore. I am blessed they try to understand. I’ve still internalized what they used to say though.

    • TrixNY

      698d

      My lupus has progressed enough in the last two years that I need to consider a complete career change to keep working. I am/was a teacher, and my last two years in the classroom felt like one big flare. It is too physical a job for me to continue (childhood special Ed). In addition to feeling guilty for not bringing in a full time income for over a year now, I am devastated to leave that job. I truly loved the kids and loved my work - but I had repeated mornings that my principal had to cover my class while I was on the floor of the bathroom with a fever, vomiting, and with uncontrollable joint pain. I try to work online, but as all of us with Autoimmune diseases know, it’s impossible to know when you’ll feel good. I was tutoring online but had to move students around flare ups. It’s depressing. My husband started off supportive but now the questions from him (and other family) have started (maybe you can teach part time?, maybe there’s another grade to teach that would be less stressful?) I get it, they’re scared. I’m scared too.

      • Saillea

        698d

        @TrixNY You're brave and you're a warrior!!! Public places are scary because of how easy it is to get sick from others. I can't even imagine willingly going into the germ-fest that is a public school!! You're a rock star and don't let them tell you otherwise!!!

        • TrixNY

          697d

          @Saillea awe, thanks. Don’t feel that brave though! I did it as long as I could, and this past year out of the classroom has been a relief. I was having panic attacks being the only one masked in such a crowded space. I feel like my world got really small with lupus and even smaller with lupus during Covid. My friends have basically given up on me, they think I’m being dramatic about not wanting to be in public indoor spaces. Hoping to make more friends with autoimmune since they’re the only ones who will understand feeling crappy everyday already.

    • MaryC

      698d

      I can't believe my mother in law still thinks I don't get any money & that I should go get a job. My husband had to tell her again that I get SSD & I can't work.

    • Catlady121427

      698d

      Also it sucks the fact we don't look "sick" so people don't want to take us seriously

    • Catlady121427

      698d

      Saillea I feel U...my mother is always telling me I need to get a job...my step-dad actually stay with me & my family & learned first hand how bad my pain is

    • AsianSunshine

      698d

      I worked as CNA f/t..but in a year I had 3 hospitalization..now I work p/t volunteer..n try to work on my mental health wellness daily. I have SSDI so I can work n keep the pay..so in future I plan on working gainful employment as Peer Counselor

    • Kate1985

      698d

      I’m embarrassed by it. They never talk to me about it but probably judge. There were times I could’ve worked but didn’t. I’ve kinda been babied and lost maturity points after my psychosis. It’s my own fault.

    • Mamasboys

      699d

      I can relate to what your going through. It’s so hard and hurtful to be in this position. It has definitely caused my depression to get worse. I have had a craniotomy to remove a brain tumor and endometrial cancer in 2018 and now have other health issues which has caused me to not be able to work. This has caused me my marriage of 20 years and my 2 sons to have anxiety. My family has side jokes about how I think I’m a princess who doesn’t have to work. My friends pretty much gave up on me. I’m alone most of the time but it’s ok. I’ve learned to enjoy my alone time and work on myself and accepting the new normal. Yes you need to do what is best for you. Don’t feel bad about it. Only you know your body and what you can and can’t handle. Be kind and patient with yourself 🙏

      • Saillea

        698d

        @Mamasboys Thank you. I'm sorry for what you've been through. You're right... nobody knows my body and my limitations better than me. People are just awful sometimes. 🤗 You don't have to be alone though. We'll be here for you. 🤗

    • CYBERKAT

      700d

      😥🙏AVIAN, I <<>>IN ONE OF HIS """ UNCOUNTABLE & UNCONTROLLABLE ALCOHOLIC RAGES--- WHEN """ I WAS--- JUST 8 YRS OLD & HER VIOLENTLY TORTURED ME """ DURING THE <<<1ST 15 YRS--- OF MY LIFE>>>>THEN I WENT THROUGH """ SEXUAL ABUSE FROM 3 """ OTHER ADULT FAMILY---- MEMBERS"""FOSTER GRANDFATHER SEXUALLY ABUSED ME FROM 3-8 & """ 1 OUT OF MY MOM'S OLDER BROTHERS--- WHO SEXUALLY ABUSED HER>>>AS A CHILD--- ALONG>>>WITH HER """ OWN---- HYPOCRITE FATHER>>> ANYWAY, HE RAPED ME>>>WHEN """ I WAS--- A MEASLY 9 YRS OLD---- SO ALONG WITH """ THE SEIZURES>>>I STRUGGLE THROUGH--- EVERY HOUR>>>OF EVERY DAY--- TO """ STAY ALIVE THROUGH--- I ALSO HAVE--- HAD & STILL HAVE """ SEVERE P.T.S.D/P.T.S.I--- LIKE THE '"""MEN & WOMEN--- WHO COME BACK>>>FROM '"""WAR DO--- ONLY MY WARS>>>WERE--- AT HOME¡¡¡""" THEN I DREW 4 ABUSIVE MEN>>>TO ME & 2 LEFT ME>>>WITH 2 """ NOW VERY IMMATURE GROWN-- SELF CENTERED, UNAPPRECIATIVE BOYS--- TO RAISE>>>>"""AS A SINGLE, DISABLED MOTHER--- BECAUSE--- I HAVE--- ALSO BEEN>>>IN 3 "" MAJOR CAR ACCIDENTS---1 ST I WAS--- 21 YRS--- OLD>>>I WAS GOING """ TO COLLEGE <<>>MAINLY--- IN MY SLEEP--- SO, I WAS--- ALLOWED """ TO HAVE A DRIVER'S LICENCE & DRIVE--- BUT """ I TAXED MYSELF--- & HAD A GRAND-MAL SEIZURE---2 WEEKS>>>BEFORE """ I WAS--- TO GRADUATE>>>FROM COLLEGE """ WITH >>>AN ASSOCIATES DEGREE--- IN OPTICAL SCIENCES--- ON THE "" DEAN'S LIST--- MIND U---& I TOOK THE """ OHIO STATE BOARD'S OPTICIAN'S EXAMINATION TO BECOME<<>>AS OPTICAL CLINICS--- SUCH AS """ LENS CRAFTER'S, SEARS OPTICAL, ROYAL OPTICAL, OPTICAL CLINICS, ETC . & I {{{COULD BE MAKING>>>$18-$24 AN HOUR--- RIGHT NOW>>>AS A LICENSED OPTICIAN--- ONLY I'M HAVING """ TO BEGRUDGINGLY EXCEPT>>>{{{{A MEASLY $695 IN SOCIAL SECURITY DISABILITY INCOME THAT """ IS DOWN FROM A """ ALSO MEASLY----$806--- THAT IT STARTED OUT>>>IN 1995 <<>>6 TIMES--- TO BE """ APPROVED FOR&-- TURNED DOWN """ 3 TIMES--- FILING>>>ON MY OWN & THEN HAD """ TO GET A LAWYER>>>& WAS TURNED 3 TIMES--- & THEN HAD """ TO TAKE MY CASE>>>TO COURT--- TO GET MY """ SOCIAL DISABILITY INCOME APPROVED>>>BECAUSE--- BACK "" THEN--- THEY WERE SAYING """ EPILEPSY <<>>10-22 GRAND-MAL SEIZURES---A MONTH>>>SOMETIMES---10 GRAND-MAL SEIZURES & A FEW PETI-MAL SEIZURES--- IN JUST ONE DAY--- PLUS """ 4 HERNIATED DISCS IN THE LUMBAR SECTION OF MY BACK--- WHICH I'VE HAD 13 """ STEROID INJECTIONS IN MY SPINE>>>TO GET ME>>>"""OUT OF THE DAMNED """ WHEELCHAIR I WAS--- LEFT IN """ FOR 5 AGONIZING YEARS--- DUE TO THE """ 2ND>>>OUT OF 3 MAJOR CAR ACCIDENTS & I ALSO FOUND OUT <<>>& WAY """ I WAS BEING <<>>THAT DISABILITY--- SO U CAN>>>LAY UP--- ON UR """ FAT ASS>>>& DRAW """ THAT MEASLY DISABILITIES & MEDICARE---"""WHICH--- IN MY OPINION>>>{{{BOTH SUCK--- WHEN I """ COULD BE USING>>>MY DEGREE & MY OPTICIAN'S LICENSE & MAKING $$$18-$$$24 AN HOUR RIGHT NOW--- THEY CAN>>>HAVE THEM BOTH}}}. JUST REMEMBER---UNFORTUNATELY>>>PEOPLE>>>ARE IGNORANT & <<>>THEY SPEAK & REALIZE--- WORDS {{{DO HURT--- UNLIKE --- WE WERE RAISED TO BELIVE>>>THAT """ THEY DON'T ¡¡¡"""}}}. IF """ ANYONE--- I DON'T CARE>>>FAMILY OR NOT---{{{ IF THEY>>>HAVE--- """ NOT WALKED>>IN UR SHOES>>>ON THE HORRIBLE ROCKY ROADS>>>THAT U HAVE & <<>>THE ***HELL--- UP!!!***>>>BELIEVE ME--- I KNOW--- ABOUT """ THE BEING RUSHED>>>TO THE HOSPITAL>>>IN AN AMBULANCE """ WHILE I WAS--- OUT SHOPPING>>AT OUR LOCAL WALMART--- & WENT>>>INTO """ A GRAND-MAL SEIZURE---& I WAS--- ALONE--- I HAD """ TO EVEN BE<<>>IN A COMA--- FOR """ ALMOST A WEEK""" BECAUSE--- I DIDN'T COME OUT OF>>>THE """ 3 GRAND-MAL SEIZURES & SLIPPED INTO>>>A PETI-MAL SEIZURE & NEVER CAME OUT OF IT--- UNTIL 5 DAYS LATER¡¡¡""" OOOOOOOHHHH, BUT I'M FAKING IT ALL & <<<"""WANTING--- TO LAY UP--- ON MY """ FAT REAR & DRAW--- STUPID """THE MEASLY S.S.D INCOME & MEDICARE¿¿¿""">>>>""" YEAH¡¡¡ RIGHT>>>>{{{{ N*O*TTTTTTT¡¡¡}}}. SO, BELIEVE ME>>>WHEN I SAY """ OOOOOOOHHHH BOY, DO I BELIEVE & UNDERSTAND>>>WHERE """ UR COMING FROM, MY FRIEND!!!""". AGAIN--- GOD BLESS!!!""" LOVE, KAT ,👍🐈😉😘😸😊😍😺🤗🦄🐈👌"""YES--- WITH """ 9 LIVES--- OR <<>>MOST OF THEM--- OFF¡¡¡"""*** 👇🙀😱😲😼😹😪👎

      • Saillea

        699d

        @CYBERKAT Oh hon.... how horrific! I was sexually abused also...at 12 and again at 17 years old. I know that's not nearly what you went through but I do understand. 🤗 People really can be horrible.

    • avian

      700d

      yeah, people are constantly bugging me about why i'm not working full time. right now i'm looking for a job because it's become increasingly evident through my last couple jobs that even part time is hard for me. but everyone keeps asking me when i'm gonna start working full time and making me feel guilty for not when it's hard enough finding any kind of job to begin with that would be in any way accommodating to me

      • Saillea

        699d

        @avian I know what you mean. You just can't please everyone... but why do those closest to us have to be so hurtful?

    • Leannta

      700d

      I can totally relate. I just recently had to stop working bc of all my illnesses. I don't have enough "credits" in to get disability. I can no longer pass the physical test to keep my job. My husband just got in an accident with our only vehicle coming home from work. I have applied for ssi but that can take many months and have many hoops. Today I am sick sick...throwing up...chills etc. I have a bachelor's degree as well but in my area of study I need a master's to do anything with it and I can absolutely not afford more college. I feel worthless.

      • katzgoddessa

        694d

        @Leannta I know what you mean about a Bachelors not working cause you need a Master's but can't afford school right now and not sure what I would gain from it. My mother use to (shes gone now) "attack" me about quiting my jobs or not being able to do things, raising my kids wrong, etc, etc. But sister #2 is perfect no matter what she does. And sister #3 is on disability because her ex wanted her on it. And that's okay and buying those 2 grand kids school clothes supplies etc. But mine have too much stuff. After she did my sister #3 went to my dad wondering when he was going to buy their clothes and supplies. I was always the wrong one, doing nothing right, unrealistic goals, expectation, etc. That always hurt another until after about 10 years of therapy and her being dead.

      • Saillea

        699d

        @Leannta I'm sorry hon. It really is a hit to your mental health to go through it...and so much more so when nobody is supportive. You're in my prayers!! Hope you have a disability attorney. It makes all the difference in the world!!

    • dutchessnicolex

      700d

      I hear this every single time i see my parents. They say im worthless.

      • lightestofheart

        694d

        @dutchessnicolex you aren't. You are enough, you deserve respect and kindness.

      • Saillea

        699d

        @dutchessnicolex I'm sorry to hear that. People can be so cruel!! 🤗

    • NanN

      700d

      Saillea... 🙏❤️ I can totally understand where you are coming from. When I did get on disability (for the 2nd time), I had 14 qualifying criteria. I was a Respiratory Therapist for the while. I would love to be working in medicine still. I'd love to be working. It's just unsafe for me, and anyone who may be immunocompromised. It's true, I look totally "normal". I'm sure a lot of disabled people do. I've had people say stuff, assume that they know, but really don't know. I just have to set small goals for myself, and separate myself, while still remaining a member of society. It's gotten easier over the years. God has given me a number of talents to keep me occupied, but as you all know, the depression can be unreal sometimes. That's why I came to this place. Just to be among others who suffer. There's a lot of strength to be gleaned from being in a place where others "get" you. The last time I was put on disability, I was very fortunate in that I had long term disability insurance through my previous work. I also cut to the chase, got lawyers who specialize in disability cases, so I didn't have to chase down all the documentation, "evidence" and so on. If you have multiple hardships, definitely consider disability benefits. It has blessed my life immeasurably. Be amongst people who lift you up. It's so vital to have a support system. I am constantly humbled by the things others have to go through, and still be alive. It's tough, but we can all do it until we are called home by God. May God bless you all. "You've got a friend in me"🤗

      • Saillea

        699d

        @NanN I'm sorry for your suffering. I'm on disability and have been a long time despite several failed attempts to return to work. My lawyer went before the judge for me with my absolutely massive stack of medical documentation and the judge said "why are we even here? This is cut and dry". The people I'm talking about know what the medical records say and what my Dr says but still think because they work despite bad knees (my brother) and bad backs (his wife) someone in "as good of shape" as me has no excuse to be on disability at all. Forget that I have a very rare autoimmune disorder and I can go into anaphylactic shock just from somebody walking by wearing perfume or smoking a cigar and I catch every virus that crosses my path because my immune system flat doesn't work. I mean... just going to the store and running errands can be dangerous for me. Throw in all the other conditions including spinal problems and fibromyalgia....heck yeah! I should just jump right in there and get to work. It's so hurtful. My brother keeps suggesting work from home jobs but they don't have good enough medical insurance to take care of my team of drs and I can't go without my meds and treatments for even one day without risking my life.

    • Reallyhopeful

      700d

      🙏 I know what you're talking about! I was a single mother of four boys and I worked and I worked until I could not stand the pain. Now I'm on disability. But my family look down on me because I never made enough money to support us. I didn't have a college education when I was younger. I didn't get that until I was 31! But yeah, you get look down to buy your own family. It's a really sad situation and I feel for you! Don't let them get you down! Tell everyone that you are doing everything you can just to take care of yourself. That's all you should have to do.

      • Saillea

        700d

        @Reallyhopeful I'm sorry you had to go through that. I'm a single mom too and totally get it. My son graduated highschool the same weekend I graduated with my bachelor's. You're never too old to learn...but having all the education in the world doesn't make you physically able to work. Hugs!!!

    • TabbysMom

      700d

      I am so sorry. No one should be treated that way! Until very recently my illnesses are all invisible, RA, FMS, RLS, to name a few. Recently, like a week ago, had 3 discectomies & 3 fusions in my neck. Sporting a cervical collar with a nice size incision. Does any of that matter? No. Not at all. The things I did & now cannot do, are not getting done. I completely understand & it is completely wrong. May The Great Spirit be with you.

      • Saillea

        700d

        @TabbysMom Oh wow. My best friend recently had cervical fusion surgery and the screws aren't attached to anything. She's in horrible pain all the time and her husband doesn't get why she can't do all that she did before. You're in our prayers hon. Hope you get improvement soon!!!

    • DaniBear

      700d

      can you qualify for disability? that really helped me when i was on dialysis and i was so tired i couldn’t work for a while.

      • Saillea

        700d

        @DaniBear I've been on disability for more than 20+ years and have tried several times to return to work... failing every time. It's frustrating and the dogs from family and friends...most often family...are so hurtful.

        • Teaberry

          697d

          @Saillea I cut my family and EVERYONE out of my life. Silence to me is better than BS sorry NOT sorry

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