Working and Rheumatoid Arthritis
Working and RA:
Rheumatoid Arthritis is a thief. It steals so much from our lives. Very often that includes the ability to make a living.
There are ripples out from this one issue into every other area of life. Here’s a short list I bet you could add to.
- Self-respect
- Standard of living
- Health coverage
- Relationships
- Loss of your productivity to family, employer, and society
My heart breaks from what I hear every day:
One woman left her husband because he could not work any longer. She could not accept his being on disability. Maybe she saw him as lazy because his disability is invisible to her.
One woman I know is terrified of losing her health insurance and her house. Actually, I have heard that from more than one person, come to think of it.
I know one lady who works for a man who will not acknowledge the physical problems her Rheumatoid Arthritis brings. Her boss makes her stand on her feet for hours doing a job which could possibly be done while sitting.
A dear friend of mine still works at her job every day; but I do not know how she makes it through each day. She is literally not able to anything else besides her work. There are fears about how long she will be able to do this.
One person told me she knows she is no longer a “viable” employee so she will be laid off from her job soon.
I know many people with RA have had to trade down to a job that they like less, but is more suitable.
Then there are many like me (and the restaurant owner in the video) who were self employed when RA disabled them. She said, “Now I feel even if I applied to somebody else for a job, they wouldn’t want me.”
What about you? Let’s begin a conversation on this which may help one another. At the same time, we will be letting the non-RA world see what we deal with.
How has Rheumatoid Arthritis affected your ability to work at a job?
Related posts:
- Functional Measurement of Rheumatoid Arthritis
- 6 Ways to Get Hard Projects Done With RA
- What Causes the Fatigue of Rheumatoid Arthritis?
Postblog: I have just noticed that one of the blogs that I follow also wrote a post on working and RA! (Good job Terry.) Here’s the link to that blog for a clear view of his work with Rheumatoid Arthritis pain. The blog is called Dual Sport Life.
I was diagnosed 4 years ago. In that time I have scaled back from 2 almost full time jobs (1 @ 40hrs a week and 1 @ 25-30 hrs per week) to only one full time job. It took moving out of New England to allow me to do that. My job is fairly physical. I am on my feet approximately 6-8 hours a day.
I do everything from customer service to shipping/receiving textbooks. My boss is somewhat understanding. When I need to, I can spend time doing paperwork- but even then I am interrupted many times to walk here, there etc. I wore a pedometer on a few “normal” days just to see and I averaged 7500 steps a day without being in our busy period. One of the bigger issues for me is that as I am the second youngest there and don’t “look” sick (and therefore it’s easier to forget that I deal with this)- the expectations for the workload are higher for me than for 3/4 of my colleagues who are my parents age or older. I *could* constantly remind them and refuse to do some of it- but it wouldn’t really do any good in the long run.
I don’t know how much longer I will be able to do this job. I also don’t know how I can afford to give it up because that would mean losing my health insurance and without it- there is just no way I could afford Enbrel. It’s definitely being stuck between a rock and a hard place.
Hello Kelly,
Thank you for including a link to my blog on woking with RA. I have a very physical job working on a large printing press. One of my job duties is loading rolls onto the press by pushing them (3500 lbs avg) into the carriage. There is a lot of lifting, bending, climbing up and down stairs and a lot of trimming and cutting on rolls with a knife. Some days it is hard to hold the knife firmly in my hand, but I am determined to do my job without asking for any help or special privileges.
Had a really good night last night, just got home and finished working out. Going to crawl in bed so I can go do it again tonight.
my heart goes out to anyone who has to work with RA. It truly is an invisible disease most of the time. As for self-worth, I got it back tenfold after going out on disability and getting to the root of who I am. Productivity can still be a major asset in your life. I wish you well and hope it works for you, if you can no longer work. It turned out to be my biggest blessing!
I suffer from RA and Fibromyalgia, as well as intestinal strictures caused by NSAIDS and there is no way that I can work some mornings. It tends to destroy the budget. This has been the worst year, and I am no longer working, but need to.
I no longer work, my employer decided to single me out and punish me for my disability. I was cut from salary to hourly while all other office employees stayed the same. They stayed home with sick kids or husbands, took days off because they had a headache all getting paid not being dock for any time missed. I had a whole paycheck taken from me. I filed a complaint with the EEOC. Let’s see what happens.
Good Luck Robin!!!
enjoyed the video today. I too suffer from RA and Fibromyalgia and stomach problems. I work in retail which is very physical labor and on my feet 40 + hours a week. Under a lot of stress and am on a leave of absence for another week. Work is stressful and hope my employer doesn’t single me out and tries to understand what I am going through. I… Read More need to work due to financial difficulties mainly due to medical bills over the last year since this all started but some days it is really hard getting up and going in with me being in some much pain.
my summers seem to be okay, but spring is a hard time and the cold. working helps keep my mind off the pain
I’ve been a SAH mom for 9 yrs after working FT for 15 years. I’d like to jump back into the workforce but need to tackle my sleep problems first. PT is my only option now.
I blogged about that awhile back. http://ohboy-boys.blogspot.com/2009/06/getting-it-all-done-friday-or-sorting.html.
RA is definately a tough on the job for me. I am a legal assistant and the repetitive motion and the sitting for long periods takes a toll on me. Somedays,I am so exhausted, I can’t do anything when I get hom.
I am 26 years old and in July I lost my job as a nanny. I am in school to obtain a Ph.D. in Clinical Psych and I pray that my illness of Ankylosing Spondylitis does not force me to exit the work force before I ever enter it in my desired career. I have been searching for a job for months but I am only looking for part time work, full time is too strenuous for me with my illness.
I am so very lucky that I have a supportive husband who has a full time job and good benefits. I need to bring in 200 dollars a week in order to make it work financially for our family but even that has been proven difficult with my illness. I spend so much time in and out of drs offices and hospitals from complications from my meds that I have lost jobs, friends, and family. I am finally thanks to rawarrior’s amazing blogs able to recognize my limitations but know that I am not alone whereas before I felt completely alone.
While I only have my husband and two friends who ever ask me “how are you feeling” or “can I help with anything” I understand that if it is so hard for me to emotionally handle that there must be so many of my friends that cannot emotionally handle it so its just easier to not ask. That is what my parents do, they don’t ask because it brings them to tears to know the answer.
Monday I went to the zoo, all of the walking left me in so much pain that I had to stop at my parents house (half way between the zoo and my house) and lay flat on my back for two hrs before I could stand the 45 min drive to my house to take meds and then lay in bed with tears streaming down my face until 4am when I finally fell asleep. I still have trouble assessing what my limitations are and some days I am ashamed to say I can’t do that but I am slowly mourning who I USED to be and acknowledging who I am today.
The other difficult thing is that I have been trying to conceive for 23.5 months now and between the fatigue and pain it is difficult to even be intimate let alone what life would be like pregnant and off meds. I so badly want a child, I feel like a mother without a child but with my AS I have to recognize that it will be difficult to conceive let alone giving up all of my meds and eventually caring for a child.
Thank you all for being there, it is always comforting to know that I am not on the journey alone.
Okay- I came upon your webpage today- I thought I was going insane with my RA. I will not go on and on, I am so sick of hearing myself in my own head, but I am so very glad I found your place here, the reading does me good, sometimes you feel so alone or alienated from other, people dont get it, why I don’t want to sit in a car for hours and travel, or how hard it is to sit in one position for any real length of time…. of course you probably know what I am saying.. I was on Enbrel in the first two years of my rheumatoid arthritis; I really pushed the insurance company on that one. But I took myself off it, it was not helping, I thought I could go it alone, now I take plaqunil – and a med for my stomach protection. I use sleeping pills at night just to sleep. I was at my doctors this last week to see what other news there was on rheumatoid arthritis that might help, he gave me Celebrex, (LOL) I won’t take it, I am from the USA living married in Canada- I know about the lawsuits on Celebrex and the harmful side effects. I see the rheumatoid arthritis later in Oct, hope he will have some news. I won’t take Tylenol for pain; I just try to get by. If any of you please could tell me what you are being giving to slow the rate of the RA, I would be so greatful. I was first diagnosed on June 25-2005…. it is like a dangling participle hanging over my head, I pause when I have to admit my limits, I stare when I think I need to do more to help my diease, that is what it is, it is not a condition, it is something I was given when I was 50…. I know I probably it before then, but it never raised it’s ugly head until that day, I had the morning stiffness in the morning for years before, I excused it as the change of life, who wants to admit, right? But one day I woke up my right hand so swollen, I could not move my fingers, within 10 days, the other hand was attacked, then my feet, hips, it runs the cycle- then like a old movie, plays over and over again. I have been reading about my rheumatoid arthritis for years, natural, to the chiropractor for help, now again going back to the rheumatoid arthritis dr…… I feel hopeless some days and others I look for the accents of positive…. Geez, I was invited to a neighbour’s dinner party tonight, I have already declined, the idea of standing in a room full of people does not appeal when some days all you can concentrate on the pain.
So again I am asking, please people, tell me what relief you get from what meds that I should be on… sometimes I worry the meds they prescribe are worse than the rheumatoid arthritis…..
Viesta
Viesta,
I wrote a post on medication that might help you some. Here is the link:
https://www.rawarrior.com/2009/06/rheumatoid-arthritis-requires-disease/
I dont take Celebrex either since I had a bad reaction to it. But I know several people who say that it helps them. That is one of the weird things about RA. People respond differentlly to treatments. It is a constant struggle to find what combination of meds works to stop the disease – or at least slow it down.
Also, try the search box on the front page. I hope that helps you.
One thing I am doing is seeing my Chiropractor, she said there is tons of scar tissue in the muscles of a person with RA, so she is not just adjusting me, she is do ART I have to say it sure has helped with the pain in my hip, I am for anything that works, even for a few days
http://www.drabelson.com/PDF/ART%20and%20the%20treatment%20of%20Sciatica.pdf
AND I want to wish everyone on here the very best, we wont let this RA take it alive
Viesta,
I do want to say that think that there is valididty to chiropractic for certain conditions.
HOWEVER, I also need to post this warning. If RA is in the spine, chiropractic manipulation can be very dangerous. This was originally brought to my attention by a chiropractor I saw for massage therapy. She said that she would never consider doing any manipulation on me. It would be very easy to cause harm. Specifically, she warned me never to have my cerivical spine (neck) adjusted because of my RA. In rare cases, it can lead to paralysis and death.
Of course, we all have to find what works as I said above and that is often difficult. If RA were not in the spine at all, it may be perfectly safe especially a more gentle manipulation. Up to you, of course.
I dont have RA in my spine at all, thank god
I have been diagnose with RA 10 years now. In that time I have worked part time as a childcare worker when my kids were young, then I moved up to a water aerobic instructer, then life guard, and finally an aquatic supervisor. I loved that job but when I got to the point I was having difficulty working but I knew I needed to work full time, my husband found me a job as an administrative assistant at his office. I miss working at the pool and the current job is very boring! I know my current boss is dissapointed in my performance at times (whether it is speed or unable to focus due to pain) and I worry about being laid off. My family needs me to work and to be honest I would love to stay at home again. Right now my RA is back to being out of control and I don’t feel like anything is working. So I live for my vacations and my flex days. I have found that if I spread out my vacation days it does help.
I recently was fired from my job as a medical records coder. I was fired because I couldn’t do the job anymore due to my physical problems. I have RA, OA, Fibromyalgia and Sleep apnea. This year I started on Orencia with some good results. I went off it for surgery to my spine. I have degenerative scoliosis and need surgery every year or so to control the curvature and the pain. I got a new insurance carrier and had to go through the ordeal of having the Orencia approved once again. I hope I get it approved by the new year because I’ve been in a constant flare since surgery in October. Losing my job was kind of the end of the line for me. I worked from my home office for the last 5 years and I was so grateful that my company allowed this. But with my pain and joint damage, I was having trouble not only with walking but also with difficulty typing on the computer. Add to that the extreme sleepiness from Sleep Apnea and I was taking 15 hours to do 7 hours of work. My life was out of control. I have just recently accepted my disability. I have applied for Social Security-Disability. I have applied to get a wheel chair. I am looking for some part time work and just had a job offer, to work from home of course. It only took me 5 years to get to this good place but I still battle my limitations constantly.I always thought I’d be 90 years old and still hiking the Appalachian trail or white water rafting in West Virginia. Now I watch others have these adventures on the National Geographic Channel or I have my adventures by reading about them in books. It all has to do with acceptance…
I’m sorry. I hope it gets better for you.
I know about the hiking. I cherish my own pictures of us on the Appalachian trail more than ever now that I wonder whether I’ll be there again.
Good luck to you.
Hi I read your post with great interest, as I am also a medical records coder and work from home for the past year and 1/2. I was doing travel coding until I had to have my right hip replaced and started working remote. I just got diagnosed with RA in August 2009 and am just trying to come to terms with it, and trying to find all the information that I can. I am worried about losing my job as well. I know exactly what you are talking about, some days my hands hurt so bad it is hard to get through the work, and the brain fog is awful with all the reading and thinking we have to do, but the worst is the fatigue, I am so tired all the time, I get up and 2 hours later I have to lay down for a nap. Did you tell your employer about your RA or did they talk to you about your productivity. That is my biggest worry is if to tell them,how to tell them what my rights are. Thanks for listening Cat =^..^=
Cathy, I hope your RA gets remission & you can keep working a long time! None of us have exactly the same outcome w/RA and there is some hope that early treatment w/ the new medicines will help us put off the disability much longer. If you are worried about your rights, there are government officials in the US whose job is to inform you about them. Here is a link to the Americans w/disabilities act w/phone numbers to find local offices, I think.
Thank you for your response. I also have checked on the link you posted for me and have bookmarked the page. Cat
I am 34 and have had RA now for almost 10 years. I am fortunate to now work for a company that goes to great lengths to ensure its employees are working in an ergonomic setting to avoid repetitive stress injuries. This has been wonderful for me because no one is singled out as a difficult employee for discomforts from the job(me). Issues are seriously evaluated and remedies are sought, they even check up on you periodically afterwards.
After 14 years of hard work and dedication, I have been so very disappointed how insensitive my co-workers have been! I’m at a loss of words to describe how badly I’ve been treated and to sick to have the energy to look for another job ! I’ve reduced my hrs. some but the fatigue along with the depression from the RA, UC, and all that goes with this autoimmune stuff…it would be easier for sure if I had some support and a little understanding. Does anyone else on here have ulcerative colitis too ? ~Beth
Good Morning Warriors –
For almost 30 years I worked as an Admin Assistant (code word for doing the work that others get credit for!) and Exec Assistant – I was VERY VERY good at my job. I worked in a Juvenile Detention facility as the Admin Asst for the Clinical Psych office and started an after care program.
When I moved to AZ I was Admin Asst to Nursing Director in an Assisted Living facility. I had found my calling. As I look back I understand this was probably the beginning of “hints” that RA was in my future. I left that job because of the issues I had with money taking precedence of the care of the residents.
I took a job answering emails for a Fortune 50 Company. I thought – hey it’s easy, should be no stress and the money and the benefits are great.
Luckily the company pays for Short Term Disability, wish I had signed up for Long Term when I first started as now I am denied the ability to do so.
My immediate supervisor goes from understanding to being ‘bitchy’ when I miss work. Now that HR approved more time for FMLA she is a bit cold. I am no longer given the ‘side’ jobs that ease the humdrum of email after email – Whether it is just a feeling or it’s real – I no longer feel as if I am a part of my team. Sometimes if I don’t ‘over hear’ things that are going on, I will miss them entirely. People ask “how are you feeling” and sometimes it feels ‘fake’.
How much of this is my imagination and how much is real? There are days I feel that I have a target on my back. Almost as if any small mistake I make is being recorded so that I can be laid off or fired for not being able to do my job since they can’t do it for health reasons.
Once again = how much of this is real and how much is it my own fear that I no longer can do my job? I can write and normally I write very well, but because we have quotas to fill sometimes I don’t make it because my hands hurt too badly.
When I have no flares in my hands I can type 100 wpm, but on bad days I have to slow down because of typos.
I can almost hear eyes of coworkers rolling when I have to go home early because of the fatigue or the pain.
My paycheck is never a full pay because I miss so much time and this really hurts.
Today I am home because it is my day off – I worked yesterday to make up for a missed day but had to leave early because of a flare in my hand (at least it was red and swollen so it was visable) but this also makes them ask why every time I can’t work I don’t have the redness and swelling.
So how much of my issues with work are real and how much are from my own fears??
Hope all of you Warriors have a wonderful day – Sorry for the disjointed post = I have had to rely on pain meds more than usual this morning.
Thanks for all of your hard work Kelly – it is SO greatly appreciated.
Poor thing! I can relate to soo many things you said!!!
I recently closed my Barber Shop – a business that was my Dads before it was mine for 50 years! It was real hard, and I went kicking and screaming, ut I finaly came to the realization that if I continued doing what I was doing – work and only work because I couldn’t do much else and when I was off eork I had to conserve my enrgy to go back to work. I wouldn’t be around to watch my grandchildren grow up, or grow old and gray with the man I have been married to for 32 years. I did not want to be labeled “disabled”. I am now trying to find a balance in my “new life” and I am having a difficult time with it. I feel so guilty that I am home while my husband works 2 jobs. I am guilty because after he is done working, he has to go and do yardwork and I am of very little help, although I try. One of these days I hope to find my groove and will hopefully be able to ditch the guilt. I think this website helps me put many things into perspective. I just wish I could get my family to go on it and see that its not just me!
Cindy, sounds like that was a tough transition to give up your shop. It must have been awesome.
I wish I could help you with the guilt. You know what you would say to someone else right? That it’s not their fault & that they can only do the best they can. Maybe you can tell yourself the same thing. I don’ t know if this helps, but I am relieved that you have a husband who is healthy & willing to do what he does for your family.
Thanks Kelly – I am working on the guilt. I do have a Therapist an she has helped me alot as well. I think finding this site has been a Godsend as well. It’s so nice to know we’re not alone. Thanks again Kelly!
I had to leave my job as a hospital pharmacist and department director 2 years ago. Thank goodness I had long term disability insurance and was on my husband’s health insurance. I have been diagnosed with RA since I was about 20 and am now 47. My disease has been moderate to severe, complete with joint replacements, other surgeries and problems. I am not responding well to any of the biologics I have tried, which is most of them. I just started on Actemra. Working was extremely hard the last few years but it was also rewarding.
Leaving my career was devastating for me. I have found a wonderful therapist who is helping me to realize I am mourning the loss of my life as I knew it. Not being able to do simple household tasks let alone practice a profession is a tough reality. It really did bad things to my feelings of self worth, and I became very depressed.
For those of you still struggling to work, I would encourage you to do so as long as you can. Be aware of your employer’s requirements to provide you with reasonable accommodations under the ADA. But, when the time comes for you to move into another phase of your life, find someone to help you deal with it. At least for me, it was a lot harder than I anticipated.
I am glad I found this site. It is good to know I am not alone in this battle. Only people who are experiencing this disease can really understand the impact it has on ALL areas of a person’s life.
Thank you for explaining that Joy. That’s well stated & I agree with you completely.
Here is an interesting question. Like you, I did see a counselor to deal w/grief & loss of my old life few years ago. However, she could not grasp the seriousness of RA & did not take time to learn about what it is. It was still good to talk with her, but it didn’t help like it would if she “got it.” I felt like she thought I was exaggerating, so I quit telling her about RA symptoms pretty early on. Like you said, “Only people who are experiencing this disease can really understand the impact it has on ALL areas of a person’s life.” What can we do?
At this time last year I was a preschool teacher. I crawled on the rug,ran with the kids and enjoyed my very physical very rewarding career. I was 25 and happy with my place in the world. Fall of 2009 I began to have uncharacteristic knee pain and within the second month of the school year I had to stop working.At first it was just leave because the Dr.s couldn’t figure out what was wrong with me. As the months passed,though, my boss, co-teacher and I realized this would take longer than we thought and I was replaced. At first Dr.s thought it was parvo which exhibits RA symptoms.That diagnosis was a horrible waiting game-parvo doesn’t last more than six months so I pretty much sat on my hands contemplating the idea that maybe just maybe this would go away.It didn’t.I was diagnosed in February with RA and it was devastating. It’s hard for me to think about not working.The hubby and I used to envision a life wherein he would be the stay at home dad while I co-run a preschool with a friend of mine.I no longer know what to do with my life career wise-kids were my passion, but I cant get on my hands and knees,cant run or carry a child,have to avoid people with infections so it seems like doing what I love is out now.I’ve contemplated going back to school,but simply have no idea where to start!What a relief,though that I have such a wonderful hubby and a website like this to turn to.I’m very glad I stumbled upon it today!(ah just typing this SOOOOO cathartic!)
Hi Jessie, I’m glad you found the site too. Hopefully, now that you have a diagnosis, good treatment will lead to a remission for you, There’s no way to know, but it’s always something to hope for. What does your rheum dr say about your career? Many people with RA still do meaningful things – just differently than they did before.
Let’s pray you find the right treatment & the right path for you. Sometimes,even if it’s different from what we expected, it can be good. :heart:
My names Samantha, from Ontario Canada … I’m 20 years old and I suffer from RA.
The old me: motorcross, swimming, competitive rugby player …
Now I can barely get out of bed or stand on my feet for more then 10 minutes. I cry. Every night. It’s 4:42am here and I am writing this because I can’t sleep from the pain. My fiance is well aware of my disability but it’s hard for him to truely understand the constant pain I am in each and every day.
I’m young and I work hard. I currently work as a lumper making minimum wage. I lift 50lb skids all day, come home, and can’t move until I force myself to get up to go to work the next morning. RA will … no RA is, ruining my life.
Because of my age a lot of people will ask if I have broken my foot because I walk with a cane & a strechy wrap for support. When I tell them it’s RA they get this horrible look of pity “Oh I’m so sorry love”. If it’s not that I get the “Nah you can’t have RA? Your too young! It’ll get better don’t worry.”
I’m two steps from being fired and it feels like my world is spinning out of control. If there are any other young RA’ers reading this comment you’re not alone 🙂
Hi Samantha,
My heart goes out to you. I’m sure you’ve thought of trying to find another job – it seems eventually you might have to do something different. What a hard thing to go through.
Is your RA being treated aggressively? I wish there was something I could do that would help – I just told someone last night about feeling the same way – that RA makes my world spin out of control. What we really need is a cure.
I was diagnosed with mild RA just over 2 years ago, fortunately I do not get to much pain,I suffer more from the fatigue, which is extremely frustrating and do not know when it will hit!
I am now starting to realise my limits with activity!
I have been given Pregabalin for the fatigue, it was great when I was first given it, but now makes know difference.
The main thing I forgot to tell you, I was made redundant from my job at a brewery before I was diagnosed, and am looking to find employment? All jobs seem to want to know if you have medical problems, and you have to admit that you have, which seems to put them off straight away, I even tried for a position with my local health authority and even they said I was very suitable for the position, but they only had 2 posts. What they really meant was you will take a lot of time off, so we are not interested!
I am still very frustrated about what to do and where to get support, and some answers!
OMG yes, I have a very stressfull job as an Outreach Social Worker that is very demanding and very rewarding all at the same time. There are days I work, especially in the winter that leave me unable to function that evening or the next day. I am however, blessed with the world’s greatest boss who has friends with RA and Lupus and completely understands what I am going through. She is also willing to let me work 4 days a week should it become necessary. I am afraid of no longer being able to work. The fight for SSDI can take up to 2 years and how do you support yourself than. The people around me can’t see my disability yet so how will the SSDI judge see it and award me the benefit and what would I do for health insurance when you have to be on SSDI for 26months before becoming eligible for medicare. It is depressing to say the least which just adds to my problems. I try not to complain or bother others with my problems but, it is so very hard. Shari
PS—I also have Fibromyalgia and Goiters in my thyroid so I have the triple threat like many other RA’ers.
I am a Manager at a Restaurant I work 50 hours a week sometimes more. I can totally understand the financial
aspect If I don’t work I can’t afford my Meds. Because I wouldn’t be able to afford Insurance. So I have to keep working. I stand on my feet 50 hours walking, bending, reaching and lifting. I am so sore when I get home I can barely move. I force myself out of bed every moring at 3am to be at work at 5am it takes me 2 hours to be able to even move. The stiffness,swollen feet and hands and My ankles hurt so bad that I take a sleeping pill, 4 Tramadols and 9 Advil a day just to get through my day.. The Humira only twice a month. My days off are used to rest and conserve my energy to do it all again the next week….. I have no desire to do much of anything else.. I hate the way RA is effecting my life.. But I know I have to continue to fight for my Family but I don’t have the energy!!!! I can’t stop working because then RA will win so I fight the pain and fatigue. I continue to work with the Pain and soreness…… Hoping that there will eventually be some relief from it all….
I have the same story as many of you, but I’m gonna tell it anyways!! LOL. 2 1/2 years ago I was working 60 hours/week at 2 jobs. My full time job I’d been at for 13 years. I was already working at a desk because I was unable to do the job I loved so much. I worked in the State print shop in the back, running machinery etc. I wore a pedometer just for the hell of it for a few days (pre RA) and I was walking approx. 10,000 steps a day. That didn’t include the lifting, bending, reaching etc. I adored my job. When the RA struck, I was able to go to a desk job, which I hated but was grateful for. After a year of the desk job, I was falling off in productivity etc, and my boss had had a couple of “talks” with me about missing work and my inability to keep up. I was unable to keep the second job as well. I ended up losing both jobs, my health insurance and landing on disability. My boss wouldn’t even consider allowing me to go part time. I had no choice. What I didn’t know, was that even after you are accepted for SSDI, it is 2 years before you can get Medicare. So I have NO health coverage and haven’t been going to the Doc as often as I should. This is kind of a catch-22, cuz if you don’t go to the doc then disability wonders why you are on disability!! But you can’t afford to go to the doc or get on the meds. Anyways, in those 2 or so years, I have lost both my jobs, the man I thought I would grow old with, my self-respect, forget about any kind of self esteem. I sit and watch TV, or come on here. My life has gone from full and pretty happy to nothing. I don’t even know what the hell I am doing anymore. I hate this disease. I hate that no one has found a cure. I envy those who complain about the stresses of their jobs, and those who are so tired from working. I would trade my life for theirs in an instant. I miss the days of being exhausted from a productive, full day of hard work, instead of being exhausted because of sitting or walking or doing the dishes. I would trade this for that in a heartbeat, and it’s difficult to listen to those who whine about their jobs. But I guess it’s difficult for them to listen to me whine about my disability.
thanks for this site.it has answered some questions.ive just been diagnosed with RA and stating my treatment on thursday.i have mild pain in my hands and feet but the tiredness is the worst.i thought i was being a wimp and pushing myself to the limit for the last yearso the diagnosis was a relief and a shock at the same time .at least im not mad and i really am tired.
Lynn, I hope it went well this week starting treatment. Did you see the RA Map? It was made especially for the newly diagnosed, so it might help you find something. No, you are not at all “mad.”
The only thing worse than working is not working. We must move and lift and bend and take the joints places they don’t want to go. Thank God for steroids, moist heat and those little Conair vibrating pillows that help relax the muscles that are stressed out. Thank Tony Little from QVC/HSN for the bed pillow that puts my sore feet in great alignmemt. And thanks for ice, when all else fails numbness can buy you some time until narcotics kick in. Thanks for Savella, which helps minimally with the pain but allows sweet dreams, a vast improvement over night terrors and morning stupidity that Ambien and other drugs gave me.
This webssite has really helped me not feel alone. EVERYONE states the same way I feel. I’m a nurse and have been unable to work for 1 yr. It has been so hard. I have a wonderful family that is supportive, thank God. BUT I miss my old life, my friends, my ability to do it all. There are days I can’t walk, bathe myself or even brush my hair. I worry I can’t make any plans due to how I may feel. Somedays I have a list to do and can’t even get out of bed. I have had no relief with meds as of yet. Tried Actemra last and had anaphalyxis. Predisone helps but I HATE it. Recently I was prayed for and have been better. Thank you Jesus. I had long term disability through my job and applied for SSI but thus far was denied. I pay $1000 a month for insurance and will lose my cobra in 15 months. Every other insurance company has denied me. Thanks for maintaining this site. Hope my story helps someone
Hi Rose. Thanks for sharing your story. I’m still looking for the right meds too. Good luck!
Hi to all warriors and insomniac RAer perusing Kelly’s amazing website when pain and meds keep us awake!
Ditto to so many of the feelings in previous posts. Kath Jones, completely agree on the only thing being worse than working is NOT working 🙁
I am about 10 months into my diagnosis and have experienced a few job woes along the way. Prior to my diagnosis, I worked as an assistant at a great company in the film arena, using my 4 previous years of experience and media/film degree I had worked hard to earn. My promotion to executive assistant and following stress came hand and hand with my RA symptoms including wrists, fingers, shoulder, neck, back, jaw, throat, voice, hips, knees etc. 6 months into my promotion feeling crazy and overwhelmed by the above and sidekick of fatigue, fog, and all uncertainty over WHAT THE HECK is wrong with me, I made the decision to quit, citing to myself, employer, and HR that I just wasn’t good enough to handle the industry job I guess 🙁 (since I still had no diagnosis) A huge let down in my work ethic, self confidence, and future.
2 months later, trying to pick myself up and change perspective completely, I accepted a job as a flight attendant. Yes, a flight attendant… About two days after having accepted the job I was diagnosed with RA. The past 10 months have been spent loving my new job, getting over my old one, figuring out how to balance meds, pain, sleep on this new schedule and obviously physically demanding job. Now that much of the dust has settled and as I am gaining more knowledge(thanks to Kelly’s vastly helpful site!) I am beginning to recognize there will probably be a reality in my future of letting go of this as well. As more triggers and pain begin to show up even when my cocktail is working it’s just more of a reality of how much the disease will need to take a front seat.
My fears along with this include whether the job I love is actually harming my condition more and should be stopped sooner rather than later, whether to inform one’s employer or not, and like others what my rights are under the whole scenario. There is no doubt though, that it just can’t be ignored. Many RAers know all too well the reality of being “disabled” from any or all of the following: a promising career intended from the start, a job you love, or even just the ability to work and provide for one’s self at all. I wish companies and society would recognize and partner in this understanding with us!
Wow. That was a great little blog you wrote in the middle of the night, Laura!!
oops, sorry you’re right… Short & sweet has never been my strong suit. I blame chocolate and insomnia 😉
I liked it. 🙂 Don’t be sorry.
I am 33 yrs old and was diagnosed with RA 10 yrs ago, but have been dealing with unexplained knee pain since I was 13. When I had my third child, my husband and I decided that I should stay home with the kids,as we were moving to a new city and had no family or friends around to help (I trust no one with my babies, and now I rely on them for everything). My youngest is now 6 and will be entering the first grade in the fall, and we were thinking about me returning to work. I worked as a hairstylist, and am not sure what I could do when I return, even sitting hurts. I say this as my RA is at the worst point in my life,
I am currently typing this from my couch as I am unable to move from the pain in my knees and hips. How can I stand all day if I can not walk? I am currently thinking about diasability, but like the rest of you, don’t want to be labeled. I just recently found this website, and though I am not happy to hear so many out there suffer, I tear up at the thought of someone else being able to write about the pain I am not able to talk about.
I FIND IT VERY DIFFICULT TO WORK FULL TIME MY FINGERS AND WRISTS HURT ALL DAY AND I DON’T KNOW WHAT TO DO. MY HUSBAND SAID WE CAN’T SURVIVE WITHOUT MY SALARY. I COME HOME FROM WORK AND HAVE TO LAY DOWN, NO CHORES ARE GETTING DONE AND I CAN BARELY SQUEEZE THE SHAMPOO CONTAINER TO EVEN TAKE CARE OF MYSELF
Late last year I finally gave up on my job as a mail carrier. After five years of struggling through every day, sometimes crying while on my route, many times driving home with my forearms because I couldn’t grip the steering wheel, and simply having nothing left in me by the end of the day, I decided I’d had enough. My rheumatologist hasn’t been the most supportive of this decision(read about RA patients and low pain thresholds ha ha), thank God for my family doc. It was a gut-wrenching decision, but I have high hopes for the future, and know it was the best thing for me. We shouldn’t have to live at that level of misery for any job.
Hi Ruth, I’m sorry your rheum wasn’t supportive, but good luck with your high hopes now that you don’t have that physical struggle anymore.
It breaks my heart to be reading this, but at the same time it helps knowing I’m not alone. I was diagnosed with JRA at age 4, and am 24 now. I went untreated as a teen, it seemed to be in remission. I am going back now for treatment, but it is dissapointing confronting it again. I have an intense passion for drawing and painting, and am in cosmetology school because I want to do hair. I used to try to not let this disorder get the best of me, but now I question if I made the right choice going to cosmetology school. what if the time and money I spend on the program is wasted, and I end up not being able to do the job that I want to do? Up to this point I feel like I have been fairly self sufficient, now I am questioning my future abilities.
Rachel, I’m sorry to hear your RA became active again – I hope the treatment puts you back in remission again so you can do the things you want. None of us really know how the future will work out – it’s day by day for everyone – it’s just much more obvious when you have RA. ♥
I started out with joint pains in my wrists and shoulders, and it affected my job performance. At first my employer joked about my “getting old” but as things progressed, my job performance kept getting worse, and my employer got more and more impatient.
My wife and I had planned for our retirement, and wanted to travel, so about a year before the onset of symptoms we went into debt substantially to buy a large 5th wheel trailer, and a diesel hauler. Needless to say those plans have changed now. It took nearly 4 months to get into a rheumatologist in my area, so my primary care physician pulled me from the workforce to prevent further damage ( he was fairly sure of the RA, but wanted the rheumy to validate it) The rheumatologist did indeed diagnose me with RA, and began treatment, however during the waiting period, I had exceeded my FMLA time, and my employer had to terminate me. ( they were very understanding, but had to replace me ) to top it off, with RA being one of the “invisible” diseases (re: I cant see it, I cant feel it, so you are faking it), My short and long term insurance carrier refused to pay my disability. Finally after a 10 month battle I got my money, but not before we lost 1 of our homes, ( we had two ) and most of our dreams of traveling after retirement. I WANTED to work…..but unfortunately RA had different ideas. Thank God I had a spouse who read up on RA, understood its effects, and was supportive, for my self worth bottomed after the sale of our home. We have now re adjusted our goals, ( and finances LOL) and we will do fine, but RA did way more than give me pain….it took a good portion of my life savings, my self respect, and a lot of tears. Like I said…thank God for an understanding wife….I wouldnt have made it without her.
She sounds Amazing!
I wish we ALL had such wonderful support.
You are indeed blessed.
Both of you.
It’s what Life is all about.
Sticking together.
<3
Working and RA. I teach high school math in the inner-city. I returned to work from disability on the government’s “Return to Work” program. It was easier at first because I was bored and well rested at homeso I jumped back in excitedly . My husband retired and I went to work to maintain BC/BS insurance. Now going through divorce,I must work to help my son through college and take care of myself! My doctor says I should stop working. Hard call.
I have serve RA and I am praying I find a medication that works. I always wished to be a vet, teacher, police officer. I know its unlikely I could be either 3 🙁 I just want my life back. Being 22 with RA is just hideous.
I had a fulltime job before the RA seriously took over. Now, it just terrorises my life. I was fired a year after getting diagnosed because the doctors said it would be very unlikely I could work in a Library again where my qualifications lie. I couldn’t shelve books bend down carry heavy loads stand on my feet all day etc. Spent most of a year in a wheelchair. It was hard going into work when I finally did to say hello to everyone with a walking frame the pity looks were just to hard to bare. I wish I could just get better and work, being young and excited about working then suddenly having it ripped away it agony. I hope and pray we all get a cure.
Kelly,
Please explain more about the dangers of chiropractic manipulation on compressed/damaged vertebrae,including C1 and C4-5. I have just this week been evaluated by a chiropractor who insists he can help reduce pain and restore ‘full functioning of the body’ with 7.5 months of twice-weekly adjustments, at a pretty price not covered by insurance, I might add. I’m still trying to decide what to do…my rheumatologist doesn’t seem as concerned as me. Meanwhile, I’m out of my mind with constant severe neck pain and constant clicking and popping of my neck joints, and X-rays show severe subluxation, but no tingling or paralysis…yet (though I fear that could happen). The chiropractor insists he will do no harm, so your strong response against such manipulations has me wondering. Do you have any articles or studies I can read to support this view? By the way, I also was recently disgnosed with polychondritis, so i have several ‘issues’ going on in my cervical spine.Thanks!
Hi June, I think I discussed that on some of the posts about the spine & RA – click here for the list. Also, you might look through the comments on those posts for old discussions on the matter. One issue is the instability of the joints – it cannot be judged precisely & it can change quickly. If the joints are unstable, which RA can cause, that creates a danger (of spinal cord compression) that even a trusted chiropractor could not overcome. I can’t give you medical advice, but I was certainly grateful that a well-respected chiropractor who I saw for massage therapy told me to not let anyone “adjust” my neck ever. Then I did more research on it and I choose to follow her warning and pass on that warning when asked since the danger is so great. If you have “damage” and a “great subluxation” already as you mention, I wonder whether you should be evaluated by a spine specialist or a neurologist. You could look through those spine posts to show you what some of the perils may be of this situation. There are excellent surgeons who can correct these problems caused by RA or who can help you watch to know when surgery is needed.
The part about your saying: “my rheumatologist doesn’t seem as concerned as me” is another issue. It bothers me to hear this, but I do. You could just get your spine issues treated by a spine specialist – which you need anyway. If there are other issues he shows less concern about, then you could eventually look for a 2nd opinion from another rheum doc. The hard thing about RA is that since it affects so many parts of us, we have to be on alert & take the initiative to see various doctors to protect our health – whether or not our GP or our rheum dr is being aggressive on our behalf. I hope this helps some.
I am an LPN and work in a dermatologist office, part-time. I am on my feet nearly the entire day, sometimes we have only a 15 minute lunch, or rarely an 1 hour lunch. I am the oldest nurse at 53. I feel as if I am standing still while the “healthy” and younger ones are rushing around. One day recently, after 7 hours of running around I felt as if I was just going to get a chair and just lay my head down on a table and close my eyes. I wonder how others can do it full time?!
I don’t know how they can, Shelly. But, I know we don’t all have the same symptoms all the time. Even in one patient, the symptoms can change over time. People who can work full time are obviously not dealing with as severe disease activity as some others. It’s obviously best for us to do as much as we can each day, but we are the only ones who know where that line can be drawn for ourselves.
I work full time in a physically demanding job, where the medical treatment I am on is working great and I love my work. When I got this job through friends, I told my employees of my RA, though I dont think they quite understand what it is. Now they are selling the business and I worry that I may lose my job to a younger trainee(less wages), with the new boss. I am 48 and dreading the question on employment applications”Do you have any medical conditions?”, no-one will employ me.. The reality is if I cant work full time I will have to give up the house I rent and not be able to support my daughter.A nightmare!!!
Good luck jen – sounds very hard.
I had worked as a USDA Animal Infection Officer and then as a middle and high school math/science teacher for 18 years. In hopes of higher income, I had gone to the local vocational school and passed the tests to be come a Microsoft Certified Systems Engineer. I was working on my doctoral thesis in “Computer Assisted Instruction:How Can Teachers Help the Least Successful Students in School?” My husband and I lived on a 150 cow dairy farm where he/we milked and cared for about 250 cows. I was the mom that did everything from teaching the whole community to swim in our pool to being the chair of the PTA and being the liason for legislative action in our county. I had testified before Congress about the use of Roundup in food crops and 20 years later I talked to Congress about my vision for a better education for America. I’ve had lunch at the White House twice and worked with my state’s governor on educational reform.
After two years of bouts with pneumonia and weeks long hospital stays and missed days in my classroom and an especially trying trip to Epcot/Sea World with my 8th grade class, I dragged myself into my PCP’s office and said something is wrong and I don’t know what. I burst into tears and couldn’t stop crying. He looked at my sausage fingers and toes, rotating my extremity joints and took my temp. Then he said with tears in his eyes “I’m going to pull some bloodwork, get you an appointment with Dr. Brackett. Susan, you have Rheumatoid Arthritis.” I saw stars. He sent me home with a strong antibiotic, in case I had infection, b/c my temp was about 101.5, a steripred dose pack starting with 60 mg a day and a prescription for Motrin. The appointment with the RA doc was five weeks away.I slept, didn’t go to work, lost 20 pounds and finally saw the rheumy.
My rheumy is one of the better ones I have decided. He did a lot of the right things. He might have been more aggressive but the biologicals were not yet out and I would not stay on prednisone. That first major flare if awareness lasted 3 years. Two years after later, 5 yrs post dx, I had my first total joint replacement, then each year for 2 years I had another one. A hysterectomy was strongly recommended because my anemia was acute and blood loss during TJR can be a factor. I had to bank and use my own blood because of several unusual factors in my blood and a previous reaction to a blood transfusion. So…13 years into my RA dx, my lower back finally became intolerable, along with my right shoulder. A 6 hour TLIF proceducre was perfomed on my lumbar spine, fusing from L1 to S2. I have rods, screws and additional hardware to stablile my vertabrae. I had bone removed from my pelvis. The spine doctor was sitting in my room when I woke up. He gave me even odds of walking again. He told me how rough it was and how much damage there was to my spine. At the x-ray, MRI phase of the dx, he told me on a scale on 1-10, the deterioration and arthritis on the facets joints in my back was a 12. On a trip for a second opinion, a radiologist specializing in the dx of spinal issues at one of the SE’s top hospitals, said he wouldn’t know where to start on my back. He told me bluntly that he didn’t think I could expect a positive outcome from a surgery of such intensity. He said I had the most unstable lumbar spine of anyone he had ever looked at and he didn’t know how I was functioning at all, must less walking. He dx me with Cauda Equina syndrome. Yeah, more words.
After the grueling surgery, and yes, I walked the next morning, my boss, our local school superintendent, arrived to tell me she had been in contact with the school system’s insurance carrier and they just felt “I was too big of a liability to come back to work.”
My heart and my mind broke for a few days. I was only present in the physical. I went through rehab in the hospital and on the Friday I was supposed to go home, my spine doctor told me he believed I had given up and what needed to happen for me to become inspired again? I had discussed my job situation with him. I told him I wanted to go back to work and he said absolutely not.
It’s 6 years later and I am surviving. But that’s another story.
Susan
I can so relate to the people on the video. I am a nurse and changed jobs, and reduced my hours and am considering how much longer I can keep going. I actually just stumbled on this website yesterday when I googled Depression and RA. This is a very helpful blog and I will be following closley! Thanks for the information.
I am currently 21 years old i was diagnosed a year ago…. I work at a restaurant and I know I won’t be able to do it for much longer. There are days were I leave crying because of the pain in my feet or knees or elbows and hands. Besides the side affects I get from the meds are really bad. There is nothing i love to do more than be in the kitchen…..
This is an emotional one for me. Just this school year, I reduced my schedule to teaching kindergarten just half-time. RA has made me feel like I was totally inadequate. By the time my afternoon class was starting I was in so much pain I couldn’t think straight, much less TEACH 25 5 year-old-busy-children. It broke my heart. So, I went half time. My husband is furious. My children don’t get new clothes for school. It sucks. But I am much more productive and successful at school and at home. It’s worth the money-loss. But sad that it came to this.
Oh boy, where to begin? What can I say that hasn’t all ready been said. I’ll tell you about me I guess. Perhaps it will be cathartic in some way. I am a 39 year old male. I was diagnosed with RA in 2011 at the age of 38. I am sure that I had it for much longer. Like Ruth up above, I delivered the mail. Not for the postal service, but for one of those major corporate haulers. I had done this type of work for 13 years. The last 2 were pure hell. I spent many a day and night, like the rest of you RA’rs, not understanding what was wrong with me. I would tell my wife “I don’t know how much longer I can do this”. At the time I had hoped it was just the stress of the job both mentally and physically. It wasn’t. I quit that job based on how I felt and the advice of the only Dr. I could see at the time. The Dr. at a free clinic. He didn’t want to run any tests or really get into what my complaints were. The only thing he did was give me one piece of advice … “lifestyle change”. I moved with my wife and children to another state. I had hoped that a few weeks off would make all the difference in the world. It didn’t. I was now on state assistance and for the first time in my life as an adult, I went to a real Doctor. I began to describe my problems and symptoms. He got it. He ran blood tests and x-rays that day. The results we all know. Happy…Not so much. “What do I do now?” I ask him. “Go to a Rheumatologist” he says. I almost wish I had stopped there. See, like many have stated, my rheumy was less than helpful. His treatment consists mainly of a vegan diet. He is reluctant to treat me aggressively. “All of these RA drugs have nasty side effects” he says. True, but so does RA when it’s not treated. So, to make a long story longer, I am here in pain, on a minimal treatment of plaquenil(from the rheumy) and pain meds from my Primary Dr.(the only one who seems to have a clue), jobless, unable to do the work I once did(physical labor), only a high school diploma, and denied disability(I am appealing with a lawyer). My wife suffers from her own set of autoimmune diseases and is unable to work. We are drawing state and federal money, and are now being forced to attend “job training” and “job search” classes at the local work center. I have a clear set of work restrictions and necessities that I received from my Primary Dr. for use in my disability appeal that the state and feds are disregarding. As all RA’rs know, it is very difficult to sit for hours at the computer without movement. I am being required to for 36 hours, with no concessions. According to them I am apparently “available for all types of work without restrictions”, because my disease is invisible. I know and you know that I can’t do the physical labor. What then am I supposed to do? I have no qualifications for sedentary work. It’s hard enough to get work today with qualifications. I have this disability that will affect my work no matter what that work is. I have to disclose it to any potential employer. What to do? My family could always depend on me, but now what. How do I support them with this horrible disease? I went from “the man” to worthless in a very short time. This disease has taken what abilities I had from me, and left me with nothing. I know you all understand. I appreciate you all letting me rant(especially you Kelly). Perhaps in the future there will be a cure, but I doubt it. There’s too much money to be made from the suffering of others. I hope that I am wrong, for everyone’s sake.
I have had these experiences.What your Doctor writes is what they have to use. Plan of action.Keep a note book of your symptoms, problems with activity.Approach your Doctor with this information for a new work activity.Always have a copy on you when dealing with Persons assiging work.If given activities outside plan ask to see supervisor.Request a formal hearing if no success.Ask why activity is within range.Listen carefully to information to return to Doctor to correct work restriction if necessary.They hate doing hearings.We are all Warriors, never give up.
I still work full-time. Luckily I can work at home when I need to and have a great group of people who seem to “get it.” Plus my wonderful husband takes on a lot at home because work wears me out. I have an office job that’s mainly mental but sometimes the RA fog makes critical thinking really hard. I do love what I do so that makes a big difference. The one thing I don’t do as much these days is travel for work.
I have been truly blessed in my current job. My job just prior to this one was pretty rigid. I can pretty much set the hours I work and how much I take on at a time. My boss lets me work from home. I end up working at night a lot because that’s when clients can meet, but then I can choose those times and take off the next day to make up for it. There’s no possible way I could do a “normal job” with the fatigue and inability to stand up very long. I think accomodations should be more common for this and other conditions. Working while miserable does NOT mean getting more done and some employers understand this.