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Medicine Matters rheumatology

Hello, and welcome to the second Medicine Matters podcast in a series on quality of life. Today we will be speaking to Victoria Ruffing, Director of Patient Education at the Johns Hopkins Arthritis Center in Baltimore in the USA, who will be talking to us about the impact that musculoskeletal diseases can have on work, and the various recommendations and resources that can help patients to remain in the workplace.

Firstly, Victoria, why is the ability to continue working so important for patients with rheumatic and musculoskeletal diseases?

Well, I think the ability to work is no different for the patient with a rheumatic disease than it is for anybody else in the population. People work, perhaps because they have to have the money and the benefits that that affords them. They work for a sense of self-esteem. People enjoy working. I mean, if you've worked hard to establish a career, you certainly would want to continue in that career. And, for many people it gives them just a sense of purpose in their life. So, they, their work is, means something to them.

What barriers do patients with rheumatic and musculoskeletal diseases face in the workplace?

For the most part I think fear is a barrier; fear on the patient’s behalf. People are afraid they might get fired. They're worried about resentment from coworkers. They're worried about having to miss work. Perhaps they're worried about not being able to complete their tasks or to actually do the job that's in front of them. They may be worried about being at work and suffering a lot of pain, or experiencing side effects from medication.

Another thing that may stop patients is embarrassment. Perhaps they have psoriatic arthritis and their skin is flaring, and they're embarrassed to go to work. So, there's a lot of different fears that are out there on behalf of the worker. And, you know, I think that it certainly is normal to have these fears. But, in most cases in the United States, the fears are not gonna be justified. Those barriers are not really what should be holding you back.

What impact can these diseases have on work absence and productivity, and what actions can patients take to reduce this?

A 2015 study in the Journal of Occupational and Environmental Medicine found that people with RA missed nearly 14 work days a year, compared to those, compared to others who would have only missed about 10. So it's a huge issue as far as productivity.

You wanna think about what's going on in your, in your life, to perhaps on your own, prevent you from missing work. So, one of those things is gonna be adherence to your medication. Are you taking your medications as they're prescribed, and are you still having symptoms? If so, then you need to work with your, your physician or nurse practitioner and adjust your medications, so that you really are feeling your best. That's gonna make a big difference in your work life as well.

What sort of adjustments can be made to help patients with rheumatic diseases remain in work?

In the United States the Americans with Disabilities Act has, makes it illegal for any employer with more than 15 employees to fire you because of an illness. So, they also, anybody with more than 15 employees must be able to provide reasonable accommodation to the worker if the worker needs those, any kind of like a modification to be able to perform their job.

So, a reasonable accommodation may be for a person who is a cashier and is expected to stand on their feet all day at a cash register, then a reasonable accommodation for that person may be a stool, so that they're not on their feet all day. Perhaps you are in a professional arena where you're expected to dress a specific way. Well, a reasonable accommodation may be saying you do not have to wear heels, or you do not have to wear hard soled shoes, and a reasonable accommodation would be allowing you to wear maybe a tennis shoe or a sneaker, so that you can do more and you're not suffering with foot problems during the day. Perhaps you spend a lot of time at the computer, so another reasonable accommodation may be that you have a different chair, that your chair is more fit towards you, has armrests on it, is at a correct height etc. There are ergonomic workstations that you can take a look at, and things, you know, on the internet, take a look at some of the ergonomic tools that are out there, for example different kinds of mouse, a different type of keyboard. So those kinds of things would certainly be reasonable accommodations that can be made at work.

Now we can get into a little bit more if you, if you really are having some issues. So that may be more of a flexible work schedule that you could ask for, or maybe a work from home two days a week, work, you know, in the office three days a week. Now not all jobs are gonna be fit for something like that, obviously, but, it's something that you may be able to work out with your employer, especially if you, you know, if you feel that you still have a lot to contribute and you would like to really stay a full time employee.

One thing to remember, employers may say, suggest to you: "Well, maybe you just wanna work part time now." That's ok, if you feel like you wanna switch down to part time, but just remember, if you are not doing well, and you and your physician do not think that it's going to really improve, and you may have to apply to disability or social security, if you go down to part time, your social security benefits are gonna be based your salary. So it would be based on a part time salary. So if you look at all, you really need to consider what, if you decide that you need to leave your job, versus going to part time work. That's just something to keep in the back of your mind.

One thing to remember, if you need to do any of these things, you have to be considered disabled. Now, this is not disabled as defined by social security, so you're a person that's disabled. It means that you're a person with disabilities, and your rheumatologist can certainly certify that your condition interferes with your daily activities or, and makes you disabled. For example, your condition, because of your hand pain and swollen joints, you are, you're required, you really have to rest your hand or you have to take pain medication, or you can't type constantly for 8 hours. That would be considered a disability. So, it's really more how, how your disease interferes with function, that would make you qualify for a disability.

How can patients address some of these things with their employer and what resources and support are available to employers and patients with rheumatic diseases?

So, let's assume that you have been diagnosed with a disability. Sometimes people don't wanna let their work know that they've got a disability. But it can, it can help in some ways because if your employer knows that you have a disability they may be more accommodating when you need time off for doctor's appointments, to have your blood work or even if you're suffering a flare. So you, remember that you cannot be fired because you have a chronic illness. They cannot fire you. But I do understand that patients sometimes feel a little bit of embarrassment to let, to let their employers know. The way I look at that, is that all you're doing is asking that the playing field be leveled, so that you have just as much of a right to work as the person that's sitting next to you. It just may mean that you need an accommodation, and that person doesn't.

So what you're asking for is something that may be reasonable and, but does not impede the business that you work for. It's not going to hurt the business that you work for then the employer is much more likely to accommodate you. So, if you can talk to your boss about it, then that is the best thing. If that doesn't work you can go right to your Human Resources department and talk about that. But, you might wanna talk about, talk with your immediate supervisor and say, you know, what kind of a compromise or accommodation you might want. Would, you know, brainstorm a little bit, and see what kind of things can be done to help you stay employed and stay in your job.

So when you're talking to your employer about some accommodations, don't deliver an ultimatum. Don't say "I need a stool, or else I'm leaving." Come, come at them with, that, you know, you're working with them on it. So, just say you know, "I really enjoy working here. I'd like to be able to contribute, but I do feel that I would need a stool to continue my job." Which sounds much better than just delivering "This is my right to have it, and I want it." You, you know, you do want to keep things as positive as possible within the workplace.

So you may need your rheumatologist to put in writing that you need a reasonable accommodation, and certainly we write these letters all the time and it just says: "John Doe needs a reasonable accommodation due to his chronic illness. An accommodation of a stool while he runs the cash register is requested." And signed by the physician. So simple 2-3 sentences is really all that's needed. So this is not a huge hoop that you have to jump through to to ask for a reasonable accommodation.

There are a lot of different resources, and I think maybe I could talk a little more about what you might need to continue your job. So, the other thing about talking to the employer is making sure that you've got all of the things in place that you need to in your workplace. So, for example, that you've got FMLA forms in place. FMLA is the Family Medical Leave Act here in the United States, that is administered by the Department of Labor, and completing that form will allow you to take time for either a flare in disease, perhaps medical appointments, give you the time off up to a certain number of days per year, without that being held against you, and without worrying that the employer is going to replace your position. Most of the Human Resources in a larger workplace are gonna have those forms available, and those are completed by your rheumatologist.

Some of the other things that are in place to protect the worker, there is actually a Job Access Network: JAN. And that is again from the Department of Labor, and really it's an outstanding website if you go to that website because it's there for both workers and employers. And it provides ideas of accommodations, what kinds of accommodation are reasonable. It talks about how to keep people, people with disabilities, employed. So, it's a wealth of information on that website to help support patients. Another website that's important, that may be important for people with rheumatic disease is the Equal Employment Opportunity Commission website. And that will outlaw, outline, all of your rights as a person with disability and give you a place to put in, you know complaints or concerns if you don't feel that you are getting, you are getting the accommodations that you need, but also it will help you in understanding what you may be entitled to.

So, while rheumatic diseases can have an impact on work absence and productivity, there are many accommodations that employers can make to enable employees with these diseases to stay in work, and there are several resources available to support both employers and patients. You can find links to these resources at the bottom of the page, as well as other podcasts in this series on quality of life. Thank you very much to Victoria for sharing her thoughts with us on this topic.