Episode Transcript
Many times if we're wanting folks at work to know, we're reaching out for support and hoping for understanding. MS is a really, really complicated disease. It is a difficult disease to understand as a healthcare provider specializing in MS. The likelihood of someone at work, I have to say, even working in a healthcare setting, but if it is not in a healthcare setting, the likelihood of someone understanding what is going on, not just offering support to that person, but taking the next step in providing employment supports. That's very rare. Instead, what we often find is that there is a risk of the attention going from my contribution as an employee, as a worker, to my health condition.
Welcome to the Find Empathy podcast, where we discuss the interaction between health and emotions.
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My name is Dr. Meghan Beier, a clinical psychologist specializing in chronic illness and disability.
Welcome back to part two of the employment and disability in multiple sclerosis, three part series.
If you haven't yet listened to the first part of this three part series with Kathy Reagan Young, I highly recommend you go back and listen to last week's episode where she describes retraining or how to find a new career that's flexible and accommodates different symptoms of multiple sclerosis as well as many other chronic medical conditions.
This week, we're going to talk with Joe Stuckey, who is a nationally certified rehabilitation counselor who specializes in multiple sclerosis and works at the University of Washington. He's going to walk you through a lot of really valuable information, which includes things like disability disclosure or diagnosis disclosure in the workplace, as well as when and how you should apply for accommodations and the best way to support your patients through that process.
I hope you enjoy this interview with Joe Stuckey.
Joe Stuckey
Thank you so much for your time. Can you describe your role within the MS center?
Absolutely Meghan it's a pleasure to be with you and your listeners today. I'm a rehabilitation counselor and in our MS center, a big area of focus is on vocational rehabilitation services. I work as a member of a multidisciplinary medical team. That includes neurologists, physiatrists, rehab, psychologists, nurses, social workers, pharmacists rehab therapists that are physical therapist, occupational therapist, speech therapist, as well as neuro-psychology.
The rehab counseling area of focus is really in patients' lives in that intersection between health and work and in doing so, we strive to treat and understand the whole person, all aspects of life and health, to be able to be the most helpful offer, great guidance. And of course the most patient centered approach that we can provide.
In rehab counseling, we work with both patients and families, and we focus on the impact of health changes of course, at work, but also an educational activity and other life activities. When meeting with folks, I try to get the clearest picture I can on that individual strengths and any limitations that can have an impact on the patient's goals and current activities in doing so. Medically I'm in a clinic setting, work in a hospital-based organization, and I have great access to a broad range of medical information to support our patients and being able to navigate the world of work when living with a health condition as complicated and as quickly changes as multiple sclerosis, having a good handle on what's happening physically, psychologically, cognitively, as well as socially is impeding. Another big area of focus in our service is adjusting to all of the changes, not just at work in another parts of life and provide providing counseling support in those areas. As a rehabilitation counselor, I'm a nationally certified counselor through the commission on rehabilitation counseling certification.
And as such, I have training and education specifically focusing on how to best serve the needs of individuals with disabilities. And my specialization also includes medical aspects of disability and psychosocial aspects of disabilities and health. A really big factor in the lives of our patients when it comes to health change, being diagnosed with MS or any change along the path of living with MS is, is linked into what makes work so important.
It's really valuable from a research standpoint, you're probably familiar with. With information, that folks that are able to access work generally report an overall better quality of life. We know it's important with the sense of identity, it's kind of who we are and how we introduce ourselves to the world. We also see physical and emotional health outcomes are generally better. If folks are able to work in a more balanced way. And that balance really is useful to think about from. a work life and health maintenance balance perspective. Obviously income is important, but many times in the lives of our patients, health insurance benefits are directly linked to that job.
And any disruption in that health insurance can throw off the entire treatment plan. Many medications for MS are very expensive. And so patients have a lot of questions on that front as well. And what I see clinically is that really any change in a patient's employment status can have a pretty big impact.
Not only on that individual, but the family as well.
Mm. Hmm, absolutely. And I know that individuals, my work with individual shows. There are many struggles that people have when they're thinking about challenges at work. Um, so can you share a little bit about what are some of the most common challenges faced by people with multiple sclerosis, at work?
Absolutely our patients, as well as family members have a lot of fear, uncertainty and many concerns about how MS can impact work. we see clinically though, is that unfortunately many times employment challenges are either unreported or under-reported to healthcare providers. Sometimes folks may assume that the difficulties may not be related to MS.
May think it's just related to aging or other health or life factors. Sometimes folks minimize the importance of these events and the potential downstream impact. These are not easy things to talk about. And it's very natural for folks to feel embarrassed, to admit having work problems or be in denial that my condition could be getting worse and having more and more impact on important parts of my life.
Sometimes in talking with folks, I quickly realized that. There's a false sense of protection in the world of work, identifying as a person with a disability, but not having a clear handle or understanding about the parameters of the Americans with disabilities act and how it can be helpful, but also where the limits fall.
Often, what we find is that patients are reporting difficulties at work when they're in employment crisis. it reaches that stage, absolutely, I want to be involved, but when I can become involved earlier in the conversation, even at the time of diagnosis, it opens up a great deal, more opportunity for early intervention and for patients and families to get the education and information, they need to make informed decisions about navigating the world of work. We also hear a Great deal that this is really like a balancing act between work and other parts of life, investing time and energy in a career, or having time and energy to invest in my health, growing my business, or growing a family, trying to maintain performance at work or maintain relationships outside of work and friendships.
Taking responsibility to meet my job demands or responsibility for my own happiness and balance in life, it can get challenging. MS is one of the conditions that I work with, where there are absolutely vocational emergencies. That can stem from an onset of MS or at the time of diagnosis. Many times there are significant disruption in health and disruption at work as well.
It can occur during periods of exacerbation or over the course of the disease. A building effect our community to burden really of the disability and disease that starts to cause these vocational emergencies. That can include job performance challenge, which could stem from cognitive difficulties. Maybe I'm having more difficulty with memory in our conversation.
And so I'm forgetting important work aspects that I need to attend to. I might have difficulty processing information, maybe in a group meeting or a zoom meeting with multiple people talking at once. I could be having more difficulty with errors or missing deadlines. All of those things can lead to performance feedback that's negative.
If I have a job that involves physical activities, it's important to think about my capacity physically. And if my limitations really exceed the physical or fall below the physical demands of what I'm required to do at work. Fatigue is another really big challenging symptom for patients. It is in a sense the current see-through, which we purchase activity.
If I don't have the energy, I'm not doing it both cognitively and physically. The combination of these challenges can certainly lead to reduced productivity, more difficulty staying on top and keeping up with work activities. If I'm out of work more often for more medical appointments, or I'm just not feeling well, that can certainly draw a negative attention. An additional impact can really stem from what I share at work and how I go about doing so it's really natural to confide in our friends and colleagues.
We hear about their changes in health status and something as significant as a diagnosis of MS is absolutely something that we naturally want to share. What we find that. Is that can invite unfortunately, extra attention and sometimes scrutiny that help to move folks into an area that they did not expect could be involving negative feedback.
If there are difficulties or areas of concern that reach a higher level. One of the things that I look for and I invite your listeners to look for is any kind of feedback on something formal, like an annual performance review. Keep in mind, too, that even informal comments from colleagues or a passing comment by a manager can be a pretty good indication that things are not in balance and potentially there could be problems down the road. One big red flag that I want to point out is in working if an individual. Has disclosed in some way they have a health condition or a disability, and they don't contact HR, but HR contacts them and asks if they need a job accommodation, that's usually a really large red flag that there was a problem recognized and that potentially their job could be in jeopardy. try to build in and encourage other medical providers to build in health and work questions when we're meeting with our patients, not just at a first encounter, but just checking in each time on how work is going. Some questions that I often use are:
you have difficulty performing your job duties.
Have you received negative feedback on your performance?
Does it take you longer to do things at work?
Are you behind?
Do you have to put in extra hours to keep up?
Are you missing work?
And if so, how does that compare to how much your colleagues are missing work?
Have you cut back scaled back on evening activities or weekend activities? If so, why? Often fatigue is the big challenge there.
And finally, a really important question to ask our patients when they're working within this. And we know it's a bit more of a challenge. What percentage of your total energy is spent at work? That's often a really key indicator of sustainability. If folks are sharing with me that 80%, 90% of above of their energy is directed toward work.
That's a pretty good indication that this is not going to be sustained.
Great. Yeah. And you know, one of the things that you mentioned, um, was also mentioned by our legal expert, which is that, you know, at checking in, at, or even having patients, uh, encouraging patients to bring up any challenges at work regularly at their medical appointments. So it can be documented somewhere.
So, you know, if they ever have. To pursue disability. It is somewhere in their chart. It's not just something new and many people don't want to think about that early on, but it is something to think about. But you mentioned a lot of different symptoms and I'm wondering if you can expand on that a little bit more.
Um, what are the symptoms that most commonly lead to reducing hours, changing careers, or leaving the workforce entirely?
Certainly really any MS symptom can lead to these changes. A key factor is finding out what our patients have to do at work, and then looking very close. And what symptoms are occurring, physical, cognitive, the energy demands, and then determining if that's a fit, if that is a match. Many times if our patients have somewhat lower educational backgrounds, not always, but often that can lead to more physical activities being essential components of the job.
So if that individual is having more difficulty with walking, balance, lifting, weight-bearing throughout a work shift, that can be more of a factor than someone that might have a more sedentary job. Or maybe even able to work from home on a computer. Patients with higher levels of education often have jobs with greater cognitive demand.
And even though folks may be functioning well enough in their day-to-day life, depending on the demands of the job, it may require higher cognitive efficiency. Then most practical day to day activities. And that's an area that we can see where cognition and those changes really can start to be problematic for people.
As we talked a moment ago, fatigue is, is really key in, in what I have learned over many years of working with patients. If fatigue is present, everything else that's going on symptom-wise is worse. Whatever I have at my best moment with my greatest amount of energy is the top I can achieve cognitively as well as physically. More fatigue, any other health factor combines to make that more challenging.
A little bit I often use with folks is to invite them, to consider an economy of resources and to build a budget. And this budget is not based on finance. It's really based on time and energy. And to think about that work life and help maintenance balance. And to, in a sense, have a budget for each of those categories.
We talked a moment ago about that question, how much of your energy is allocated to work? And what we know is that with symptom progression more and more things shift from personal relationships, hobbies, and interests, home life activities, household chores, maintenance. Health maintenance, fitness and exercise, because I can't afford to spend that time and energy in those categories.
I have to rest and reserve that for work. So that reallocation of energy resource is a really big indicator that things can be off balance. In behavioral health work that we're doing with our patients. A lot of times we can assist them in an internet in identifying older patterns, things that just might not be working in the same way by habit.
I do it this way. This is my approach. It could be that I have exceptional history of performance in a particular area. I was a star performer. I hold myself to high standards, but I might not be able to produce at that level. Sometimes new tools, strategies. This is where rehab therapies can really come in handy with physical therapy, occupational therapy, speech therapy, particular neuro speech therapy that can focus on cognitive compensatory strategies.
I might be able to help balance some of my performance and reallocate some of that energy with simply some new tools and strategies. In our patients and helping them become more expert users of this budget, encouraging them to track information and recognizing when they're having particular areas of difficulty to go back to the budget, to see what's happening on that.
That's great. I love that idea of the budget. One of the, um, individuals with MS. Who's part of this program, uh, shared that she has actually a jar in her home where everything that she does, she puts in a certain number of marbles to show how much energy it takes. And that was a visual cue for her to show what things were taking the most energy.
And so I love that idea of really tracking your fatigue and energy and understanding where your energy is going. Um, you know, when people are experiencing all of these different symptoms, It's kind of confusing about what to do, what to do when and with whom. So when patients with MS do have these symptoms that are negatively impacting work, what can they do?
One of the most important things that is the hardest to do is to keep calm because folks are scared. It's an UN, it's a period of uncertainty and there's a lot of fear here. What I try to work, with patients on is to make rational decisions based on information. To honor the feelings that go along with this, but to not use those feelings as the guide, because they're unpredictable and as we know, they vary.
Instead, engage in problem solving. Talking with healthcare team members about exploring what options might be available. One of the most important pieces of guidance and advice I think we can share with our patients when they're sharing with us, that work is a problem is to not immediately quit their job.
If I leave my job, I'm leaving behind some really important benefits. I might exit work prematurely, even changing jobs can have a downstream effect in terms of benefit access. If I have private. Short-term or long-term disability benefits. And for all of the right reasons, I'm going to seek out a lesser demanding job that might pay half of what my job paid before.
I'm still working. I still have my health insurance benefits, but maybe down the road, after that, I have to tap into disability benefits. If I've not already activated a private disability program that I might have through work, the percentage that I'm paid is going to be based on my current salary. So there could potentially be loss of income as well in this.
Another thing that's really important to encourage our patients to do is when you're facing health challenges at work, don't turn around and tell this to your manager. Don't run to HR asking for help because they do not know how to help you. Instead, first go to your medical team. An important factor in this is the level of urgency.
Are you the only one that's picked up on these difficulties? If so, It's not quite as pressing, has it reached a level of concern with negative feedback? If so, has that been formally documented? Is it in your annual review or is it a performance improvement plan? And of course asking, do you really feel like your job is at risk?
Could you be facing employment termination? When that happens again, it's important to keep calm and seek guidance from the healthcare team or their medical evaluation. And workup might be helpful if I'm having difficulty cognitively. If I have access to it, a comprehensive neuropsychological evaluation is going to give me really useful information on my cognitive strengths and any areas of difficulty.
That treatment options and strategies might be able to be developed that help increase my efficiency at work. Also during this time and keeping a lower profile, try to collect as much information as we can on what benefits are available that may be able to allow us to take a medical leave of absence. Are there some wage replacement benefits, either through a program at work, such as short term disability, some states have short-term disability programs now as well, including Washington State.
Yeah. Important as a healthcare provider to recognize that many times we can't see the full picture. And if we can't see the full picture, we can't come up with all of the different solutions and options that might best serve our patients needs. And engaging in an interdisciplinary approach to problem-solving and care often is a better strategy.
I feel very fortunate to be able to work with a broad ranging team and reach out to individuals for feedback, treatment options. This doesn't only have to occur at the time of a problem, many times having an opportunity to be referred to a psychologist or talking with a nurse educator about learning more about my condition, what could happen and what early intervention strategies, particularly around work might be helpful.
The earlier I can meet with someone absolutely the better. And so think of vocational rehabilitation as one of those early intervention strategies.
In general, a collaborative care approach can really help to identify barriers, develop job supports, and ultimately help our patients make the most informed decisions about work and navigating living with MS while working.
There's a process that occurs. And it's, non-linear, I'm going to describe this in a bit of the linear way, but I want to point out that it doesn't always move in this fashion. If we look at what our patients share with us and research, the far majority of people when they're diagnosed with MS, are working full-time. Over time. The number of people employed definitely declined by five years out. That percentage is significantly lower. Many times. If folks are experiencing difficulty with working, there may be some changes that help them to continue doing so maybe a formal job accommodation through the Americans with disabilities act.
If I have more difficulty in the morning with fatigue and it's reasonable for me to start my day a little bit later. That could be a very reasonable accommodation that allows me to continue to be productive at work. I might reach a point where I can't do this particular job, but there's another job that is a great match that I might be able to transition into.
Some folks find that maintaining a full-time work schedule may not be doable, but recorders, even half time. If I can work time, I can maintain health insurance benefits. And that might be a very reasonable change. Again, anytime someone is considering a job change or a work schedule change, take a close look at those disability benefits through work, if available to that employee, because it may be possible to start the application in my own occupation, my full-time job, and receive some wage replacement for my reduced income.
Over time working full-time or part-time might become more challenging and it might be necessary to take a medical leave of absence or even start to transition out of work. Under certain circumstances, folks may have some improvements down the road and be able to engage in some type of work activity in a way to supplement other benefits such as disability benefits.
So these are steps along their path that folks with MS may experience while we're.
And when you're working with individuals, what are some of the most common questions that they come to you with?
The most common questions involve disclosure. Who do I tell? What do I tell. Is my job safe? Am I protected? And what are my rights as a person, if I have a disability. And that word means different things to everyone. And each system has its own unique definition. It's kind of a loaded word, but what are my rights? Should I tell my employer about my disability, big one that comes in. Over many years of working with folks, I have come to appreciate that the most useful and simple answer is no, do not do not share this information. That's a difficult thing for a person to hear, particularly with a new diagnosis, because there, there is understandably stigma in our world about having a disability, have a co having a complicated neurologic, particularly a progressive condition.
It, it makes more sense to folks. If, if you engage them in a conversation about what is the purpose of the disclosure? Getting beneath the surface of that question often helps the individual make an informed choice about what's right for them. Sometimes we feel obligated. I need to tell them they've been very supportive of me at work.
Um, my colleague has been out for a particular health need and everyone was supportive of her. And I, I felt like I have to do the same. Some folks have somewhat of a misunderstanding that they have to share that information, which is not true at all.
Many times if we're wanting folks at work to know, we're reaching out for support and hoping for understanding, MS is a really, really complicated disease. It is a difficult disease to understand as a healthcare provider specializing in MS. The likelihood of someone at work, I have to say, even working in a healthcare setting, but if it is not in a healthcare setting, the likelihood of someone understanding what is going on, not just offering support to that person, but taking the next step in providing employment supports. That's very rare. Instead, what we often find is that there is a risk of the attention going from my contribution as an employee, as a worker, to my health condition.
Sometimes that can lead to my value, my perceived value, by others, including my manager, maybe being reduced. Disability discrimination is absolutely illegal and it absolutely happens all the time. Many times folks may not even have realization that they are engaging in discriminatory behavior. I've worked with patients who are very, very clear in their experience that they were passed over for a job promotion because of an attitude that a manager or hiring manager had. I've also talked with patients who described their manager is the most supportive person that they know. And the manager elects to not put anything else on that person's plate and passes that individual over for a potential promotion because they don't want it to be even more burdensome.
The manager probably has no real depth of understanding about what makes that promotion a better fit in this promoted role. I might not have to check in and out of work to be able to go get my infusions. I might not be depleting my sick leave in that way. It might provide me more flexibility to be able to work from home, which can help me with energy conservation, if fatigue is a challenge.
So when we disclose health information at work, We released some control of how that information is disseminated, how it's interpreted, and in some ways lose our decision-making control.
Hmm.
Just want to highlight one more time that we are under no legal obligation to disclose health information at any stage of employment, not a diagnosis, not at symptom change.
And I generally do not recommend "for your information" disclosures. There are certain times though, when we do have to share something only when addressing employment needs related to maybe an Americans with disabilities act, ADA accommodation. There are health-related questions. Sometimes when we're using leave from work, intermittent leave or continuous leave through the federal family and medical leave act, FMLA.
In these situations, I encourage healthcare providers to be very selective and disclose only the information that is necessary to accomplish the goal. Rather than this being an open process with a patient, talking with a manager or this moving throughout the work environment. It's best to go straight to human resources, find out if there's a particular form and human resources must maintain confidentiality.
A manager may not have that same awareness, actually. Any health information that is disclosed on an accommodation form or FMLA form has to be securely stored outside of that person's human resource file. big question that comes up. Can my employer discipline me or fire me if I have a disability. I, I, I, I'm sorry to say that the answer is yes.
And I'm also sorry to say that. I have talked with a number of patients that have misunderstanding in this area. One of the key things that I think is the most important in navigating work when living with health impacts. Is keeping in mind that for the most part, I need to be able to meet the key parts of my job.
Now, if there is a way for me to be able to do so, that might be a little bit different than standard, maybe through an accommodation process. That is great. If that's reasonable and I can perform my job. I'm secure. However, if I cannot perform the job, if I am having difficulty with mobility and my job involves weightbearing and walking long distances, if I can't meet that demand, I can absolutely risk facing disciplinary action or even job termination.
So again, understanding clearly. what are the challenges that our patients are facing in terms of their individual health experience and what are the individual demands of that job? That helps us as providers better guide our patients. Again, employment, termination leads to a loss of a lot of things, not just income loss of medical benefit.
And if I am let go fired from work, laid off, which going to be a creative way to remove employees. At that point. If I had access to work-related short-term or long-term disability benefits, it goes out the window. I have to activate those while I am an employee on medical leave status is fine, but while I am an employee.
Instead, An approach that allows the patient to buy time can be really, really helpful. This kind of fits into that early intervention approach that I referenced earlier. During this it's important for patients to immediately get in with healthcare providers. Again, I know I've said this and it's really important to repeat, do not quit the job. Instead even if there is no way this person can continue doing this job instead, go out on a medical leave of absence. If available, using benefits such as family and medical leave act, which we're going to talk about here briefly for just a moment and tapping into any other resources, such as short-term disability.
This is the time for medical evaluation and maybe even that interdisciplinary referral for rehab, the goal is try to identify while this person still has a job. Are there employment supports that can help that individual continue working? FMLA is a great program and many folks with MS get benefit from this.
It's a federal program that does not include money, but it does provide up to 12 weeks of leave from work. During that leave, it protects my job and my benefits at work. It can be a 12 week chunk of time. Many times folks that may need to take more time off of work may have exhausted sick leave benefits can use it intermittently.
And that adds up to about 480 hours a year. Great resource. Want to invite you as well to consider the step beyond that. In situations where patients may have exhausted that 12. It's possible to request ADA leave. It's an accommodation for additional leave. And I don't recommend open-ended leave because that usually gets shut down pretty quickly.
Instead just treat it as if it is 12 more weeks or a certain timeframe. Treat it as if it is FMLA. It is not a guarantee, but it's something to consider as a next step beyond. It can not be an indefinite.
Another question that comes up. What are my rights? And, and I know this, uh, we've, we've talked about this already.
That's through the Americans with disabilities act that provides federal civil rights protection for individuals with disabilities. One of the areas that it focuses on is preventing employment discrimination. Access to that includes the number of employees. So if it is a very, very small business, federally, if it is fewer than 15 and employer does not have to follow ADA standards, if it's more than that, they do.
Fortunately many states set even lower numbers in Washington state. It's a business with eight or more employees. Relation to employment rights, getting back to the parameters here. I have rights, but I must be qualified for my job. I need to really be able to do the essential functions with, or without an accommodation.
If I can't do that, a possible accommodation could be an alternative job search, but there are no guarantees on that. The employer can be as generous as the employer cares to be. Can bend over backwards can, can be exceptional and many are. However, knowing what the least common denominators are and the basics helps our patients that meet more realistic expectation.
Employers are not required to eliminate a central job functions. They are not required to create new jobs. They are not required to lower productivity standards. And they are not required to approve a job accommodation request just because it comes from a medical provider. An accommodation process is really a negotiation process and there are some challenges that can go along with it.
There are many great accommodation options out there. And I'd like to share with you a little bit later, some resources that I often go to that I'd like you to have access to as well. A couple of really quick practical guidelines. And this, this comes up a lot because we're often assisting our patients.
They come to us and ask for help. Put all accommodation requests in writing. Because I've seen too many times a patient have an informal accommodation that works great with a manager that is reorg out or no longer there. And it goes out the window. Another really important factor is that the accommodation, medically, really needs to only reference what is tied to that accommodation need. I've seen some accommodation letters that is a laundry list of all of the problems, the patient encounters. That's not necessary. And it also runs the risk of our patients perceived value at work being compromised.
Instead of formula that I use a lot that I invite you to consider it's linking whatever the symptom is to the accommodation and how that resolves the problem.
A really important tool in this. The job description, what is required in this job? So as we're talking about this with our patients, if they can bring in a copy of their job description, I can compare what we're recommending to what's required in the job. Again, people need to be able to meet the essential functions. There is risk in an accommodation process. Folks don't often realize that. If my job has an essential demand in a particular area, and my accommodation request is clearly documenting that I cannot meet that demand. Some employers can interpret that as a medical restriction and then it can be used in a sense against the individual to document, inability to perform the job.
So accommodations are incredibly important, very valuable. And there are some parameters that are really helpful. One of the terms that I use that I invite you to consider is to avoid absolute statements instead of. Keep the door open again, this is supposed to be an accommodation. We don't want any of our recommendations to be overly limiting.
And instead use a statement that might begin with "would benefit from" that creates a dialogue, which is really important in this process.
Yeah, that's great information. I'm one thing that I usually do when I end in accommodation letters, say something, if these accommodations are not reasonable, um, or can not be used in this workplace, please contact us so we can work with the patients, um, to rehab, basically those areas. So I think, uh, really the goal there is to keep that door open and also to say these are not absolute. So I really liked that you mentioned that.
Absolutely.
so, no, that's okay. Yeah. Um,
your word, but yeah, it's a great suggestion.
um, so how do you determine when it is time for someone to stop working?
Wow. That's a really big question. It's quite loaded as you, as you know. So it, it, that question often comes up in that balancing act that we talked about before and, and. Our patients can reach a tipping point where all of the strategies and supports and solutions may not really provide what's necessary to keep going.
These changes that tip can be gradual and it kind of an accumulation of challenge and burden over time. Or it can be abrupt with an MS flare where things don't go back to baseline and suddenly our patients are faced with the challenge of needing to exit. A couple of red flags that I inquire with patients about that you could consider using:
One is poor attendance. Am I leaving work early, missing full days. Has this drawn negative attention if I've used FMLA? Have I used it up? Is, is my attendance now at a point of being a problem and running the risk of disciplinary action, that big red flag.
Or performance job, performance, errors, difficulty keeping up again, those physical and cognitive and energy man's demands, not being able to be met bigger red flags with something more formal, like an annual performance review or a performance improvement plan. Performance improvement plan means that if it does not turn around, that person is out.
Exhausting employment supports is another red flag. The accommodations, the changes that many, many folks are using day to day that might have helped to sustain work over time. May no longer provide the level of support that's necessary to keep working. In a sense. I can't work any extra hours. I can't put in any more time. The job accommodations they've reached a maximum point and I'm really out of options.
Work-life health balance. And looking at that work-life health maintenance, balanced budget is really useful in this decision making process. Is all of my energy being spent on work? That's a really red flag.
And of course the impact and the quality of life talking with our patients about how it feels to work under these circumstances. Most of the time people share with me that they feel overwhelmed. They don't know how much longer they can continue working. Life is definitely not a joy. often if it reaches this point, it comes at a cost of not only sacrificed friendships and other relationships, but I might not even be able to make it into clinic for my appointments because I'm completely out of time. And then I'm running the risk of losing my job.
So poor attendance, job performance problems, exhausting support, work-life out of balance and low quality of life are all pretty strong indicators that it could be a time to exit work.
final thought on that, that I'll leave you with is that the decision to leave work is truly about rebalancing one's life.
I've talked with a lot of folks and help them navigate this process. And, um, years ago, Used to be in restaurants and people could see our faces and those kinds of things. I had a patient walk up to me that I had seen years before that said, um, the coaching that it was time to exit work was one of the best decisions that she had made, that she was able to regain so much in her life by making that difficult decision and being able to reallocate all of that time and energy that she had been investing in work for so long into these other important areas. When we're looking at it from the side of an, a working individual facing the potential of exiting work, it looks like a really dark future, but that is not the entire view.
Absolutely.
So when we're exiting work, it's a process. Again, not resigning a job, but instead, going on medical leave, collect as much information on medical benefits. What financially is going to be the impact. Don't leave anything on the table. Now folks don't make as much on disability benefits as working. So there can be many times some lifestyle changes or other things that need to be evaluated.
Talk with the medical team. Involve family in decision-making as well. And from a behavioral health standpoint, reach out for support. This is an emotionally difficult process, but because we're talking about limitations, many times low loss of hopes and dreams, part of our identity, a huge part that we don't feel like we have access to and this is a lot of adjustment and acceptance that occurs over time.
Going down that path of exiting work often runs into the path of applying for disability benefits and just a few notes on that that are, I think, helpful to remember. Our patients need to be up to date in medical care. You referenced a prior conversation, uh, kind of in these areas, patients need to follow a treatment plan.
They need to report what is happening to the medical providers. So it's documented because if I'm applying for disability benefits with a laundry list of challenges, but that is echoed nowhere in my medical record, it will lead to a denial. Other things that are really helpful. In applying for disability benefits is to use all of the negative information, things that I would never want to admit happened: disciplinary action, negative reviews, work attendance records to substantiate, and to provide more information in that disability claim.
Also not just work, but very specifically describing how working took away from my ability to meet other very basic life demands. A couple of things that are important to narrow down and get agreement upon with health providers is my date of disability.
When, when is this date going to be used in echoed in my medical reports. Also, as I'm talking with my medical providers, as I'm filling out forms for disability, whatever type that is, our tendency is to describe what we can do on our best days. That is not helpful. Three weeks ago, I walked a mile. Well, that's excellent.
And not to take anything away from that, but what do I have the ability to do consistently repetitively day after day, an easier approach, more straightforward approach that I recommend for patients is to describe your worst day may be up to your average day. Definitely not your best because when you're living with MS, you don't get to pick and choose when those days or times of days.
Another important factor, particularly if folks have been living for a while with MS is the comparison of how I'm describing my symptoms now to what. Is this my new normal that I'm talking about? Or is this how I am concretely functioning now and what those limitations are compared to full function. And it needs to be full function.
Very, very quick example here and talking with a gentleman about day-to-day impacted MS, one of the questions that social security administration ask is about bathing. And I asked the patient, he said, I bathe, I'm good. Well, I knew that wasn't the full picture. However, if that's what he reported to the social security administration, they take him on his word. After a more in-depth discussion about how he actually bathes what has changed. He bathes by using the shower chair. Why is that? What is the limitation? It's important to state limitations. It was because of bilateral lower extremity weakness, balance challenge, difficulty standing in the shower and a history of falls. Suddenly bathing, which is now the new normal for him to bathe two times a week, rather than every day and use his shower chair. He bathes, but social security needs the full picture comparison.
Remembering that this is stressful, no emotional pleas and disability reports. It is difficult emotionally though, because we're, we are working with our patients. That's, they're describing the worst parts of having MS.
Adapting, living the new normal, not comparing is what we're all encouraging and coaching them to do in adjustment and acceptance.
You have to step out of that mode and take a hard look at what is missing and what has changed. And many times that leads to increased depression, feelings of being more out of sorts and out of control.
So partnering with our patients on being emotionally supportive and recognizing this is not a statement of value. This is a work and insurance process to be able to access benefits that are really important. It's important to treat it as an insurance project rather than a statement of identity or value.
Another key part is to enlist the help of family and friends that can give us not only support through this, but can offer a different perspective that can be really valuable in offering a more complete description of limitation.
Wonderful. And one final question. What are the resources that you recommend either to people with MS, um, or to mental health providers or medical providers on MS and employment?
Great question. Happy to share. So a key resource, particularly in supporting our patients with working is to tap into state-based vocational rehabilitation agency services. There are vocational rehabilitation agencies in each state. It's a federal requirement that, that take place. And they have in common, a desire, a mission to serve people with disabilities who want to work, but face barriers to finding or keeping a job. That's at the top of the list.
Another great resource is through the job accommodation network. It is a wonderful nonprofit organization that has a tremendous wealth of information for employers, for individuals with disabilities, for health providers on many different types of health conditions, accommodation options, legal resources, and there you can connect and speak with job accommodation experts there as well.
I want to give a shout out to the Universityof Washington, multiple sclerosis rehabilitation research and training center that has excellent resources online as well as a free workbook online that has many chapters that touch on employment, social security disability, managing health symptoms. And it's called the MS Workbook Living Fully with Multiple Sclerosis.
Those are the resources that I often share with patients. The National MS Society last, but definitely not least is an excellent resource on information about disability benefits, working, navigating the world of work with MS.
Great. And one final follow-up question. If somebody wants to find a vocational counselor or a professional, like you, how do they find, where do they search?
The first place to inquire is with healthcare teams. In some settings, there may be a clinical rehabilitation counselor like me. Partnering with the team and it may not be in each clinic. So if you're working with a large organization, like Universityof Washington medicine, I'm in rehabilitation medicine and work with our MS center as well.
So that's a great first step. Unfortunately, there are fewer of those throughout the country and going back to state vocational rehabilitation agencies is really key. That's probably going to be the place where most folks can access those vocational rehabilitation services and they're available in each state and many times locations throughout the state.
Wonderful. Well, thank you so much for all of this information. It was really valuable and I appreciate all the time you took putting this together for us.
Oh, absolutely. It's my pleasure to talk with you and share information. Thank you. And thanks to your listeners for all of your great work.
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