MS Skills

By Doug Ankerman

It can be difficult to accept when multiple sclerosis steals your ability to work.  A lifetime of training and talent gone.  Poof.  I know it was for me after giving over twenty years of sweat and soul in radio and advertising.

But because you have MS doesn’t mean it’s over, man.  You simply need to change your perspective.

Having MS has given me (and probably you) a whole new skill-set from which to draw upon.

Let me explain with a tongue-in-cheek look at an MSer’s new level of expertise…..

Meticulous Note Taker:  You write down everything to recall dates, times, appointments, names, to-do, shopping lists and more.  Sticky notes are your blessing.  And because your handwriting is so sloppy – only YOU can decipher your scribbles.

Medical Equipment Operator:  You are quick to determine which piece of equipment you will need to accomplish a task.  “I have the energy to walk today with canes.”  Or, “I feel weak so I’ll use a scooter.”  Also, you are the only one who knows how to properly collapse a rollator/wheelchair.

Personal Charging Station:  You can doze off anytime, anywhere, in any situation or body position.  Only you can snooze in a straight-back chair.  Ten minutes to recharge and refuel and you are good to go.

Pro MRI Taker:  You have done this so many times there is no fear of the tube.  You thumb your nose at a Contrast.  By knowing the difference of the machine’s bings and boings, you know when you can wriggle, shift and scratch.

Restroom Consultant:  Because of MS, you have tried them all.  Therefore you know the best and the worst.  The clean and the filthy.  The accessible & the not so.  Because of your expertise, some call you the “Triple A” of public bathrooms.

Floor Surface Evaluator:  You have the ability to determine the walk-ability of the environment.  You are alert to surfaces that are rough, slippery, thick, plush, wet or uneven.  Uphill and downhill are no match to an MSer’s precise judgment.

Finally,

Stain Lifter:  As one with MS you know how to get out food stains.  You know when to blot and when to dab.  When to rinse in cold water or when to pre-soak.  While some carry an EpiPen, those of us with MS are never far from a Tide-To-Go.  Being sloppy has a down-side, but an MSer is always prepared.

See, you DO have skills and talents that set you apart from the rest.  Most importantly, you have the confidence to look MS in the eye and prevail.  Multiple sclerosis can’t take your determination, intelligence, or guts unless you allow it.  Hold your head up.  Be proud.  And keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

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Employment Changes

For this month’s MS Conversations blog we wanted to focus on the topic of changes in routine, but with this thought, it was important to highlight employment changes as well, as this is something that comes up often when talking with clients. The timing is appropriate, as Fall always marks a time of change in the year itself, not only in the season’s colors and temperatures but with the familiar sights of back to school and holiday displays (because of course stores are already doing this!).

There are many individuals within the workforce living with MS, and oftentimes its symptoms can impact one’s work routine and abilities in their position. This can be very frustrating and challenging for those affected because with it comes the added stress over job security, self-worth and independence. Because of how our society views work and the roles we fulfill, many people identify themselves by their job and what they do for a living—so if this changes, one’s self-perception can change too. But it’s important to know that there are resources available to help accommodate changing needs in the workplace or help to find another position if an overall change is needed. Separating one’s self-worth and perception from one’s job role is going to be a continuous feat that society as a whole must work on, because individuals are and should be defined by more than just the work they do.

For those who have human resource representatives in their workplace sometimes it’s a good idea to start the discussion with this department if you need something modified in your role; whether it is your schedule, job location/environment or something else, there may be procedures in place for how to ask for these in the workplace. The Job Accommodation Network is a helpful source of information on employment accommodations as well. And for additional help receiving workplace accommodations or finding employment, a Vocational Rehabilitation office is a resource throughout each state that assists those living with disabilities on information and resources regarding employment needs and changes. Working with one’s doctor/healthcare team may be another avenue to assist with employment matters too, especially when discussing symptom issues and their (potential) impact.

Change can be difficult to encounter at times so it’s important to know what resources are in place that could help. Being aware of MS symptoms and how they could impact needs in the workplace can be a good starting point.

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Measuring Success

rsz_business_people_discussing

Sometimes life can be tough, and we may have to hear feedback that we don’t want to receive or work through challenging situations we don’t want to encounter. Like when the school says that your child is just not able to do what other kids can, or when your boss says that you are not keeping up to the standards the workplace requires, and if something doesn’t change soon, they’re going to have to let you go.

It is never easy or pleasant to deal with times where your “actions” or a loved one’s “actions“ are not “measuring up” to the expectations of what is required in a situation. This may occur when a real issue arises, i.e. if you are a nurse you need to have the ability to properly measure medications, and not doing this in a proper way can lead to major harm, or if your child needs a specific educational plan of action and you don’t get them help, it could be a big disservice.

Alternately, these types of situations can occur when the other person has a different “measuring stick” than you do, like if your old boss understood that you needed to take an afternoon break to be recharged and on your game for the rest of the day, but a new boss is inflexible and slams your work performance for taking a break. This type of situation can lead to major frustration and anger on both sides of the coin. The new boss has a different measurement they are using for success.

So, when it is not just a situation you have to own up to or seek support to overcome, how do you get the other party who is using a different measuring stick to see reason? First, check your own thought process by bouncing the situation off of a trusted friend, family member, or co-worker. Do they agree that you are being reasonable, or do they bring up good counterpoints for you to consider? Second, check for any formal supports or avenues for recourse. This might include documenting this situation and your concerns, or seeking out formal supports. In this workplace scenario, it might include talking with HR and asking for a formal workplace accommodation. It may also include you documenting your work actions more carefully or capturing feedback from clients or co-workers about your work to allay concerns presented by the new boss.

Not every difficult situation can be resolved, especially if neither person can compromise or shift how they are measuring success. You can do your part by being proactive in trying to see how the other person is viewing the situation, and trying to present your own views and insights in a clear and rational manner. Sometimes even simply acknowledging that you are looking at the situation from two different vantage points can allow enough of a bridge to achieve some type of workable solution.

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The Impact of MS on Everyday life

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

MSIA children impact

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

MSIA support system

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

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Disclosing MS at Work – Community Experience

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

  • Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
  • My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
  • I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

  • I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
  • I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
  • I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

  • Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
  • When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
  • My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
  • I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
  • I lost my job when my employer found out.
  • I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
  • I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

  • My boss is understanding, even though I can’t do everything I used to do.
  • My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
  • I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
  • Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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