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 RA’ers 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.
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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:
http://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