Disclosing MS at Work – Community Experience

Posted on August 22, 2014 by MultipleSclerosis.net

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?

My Silent Hero

Posted on August 20, 2014 by MSAA

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

Getting Help at Home When You Have MS

Posted on August 18, 2014 by Angel Blair

With years of increasing research and data on the condition of multiple sclerosis, it’s known that MS can be unpredictable and ever-changing in its course, potentially having an impact on different aspects of life for those affected. For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household. Meal preparation, shopping, personal care, and chore responsibilities are some things that may require extra help and attention to complete. Asking for this help can be difficult for some; noticing that how things were done before may look different now and that more help is needed for certain tasks can be hard to accept. Change can be challenging, but it’s important to know that you are not alone in this, that at one time or another everyone’s asked for help, no matter the task. Figuring out what your needs are in the home and where to find help are important parts in starting this process.

Examining what it is that you need help with in the home is a good first step in trying to find assistance. Talking with healthcare professionals like your doctor and possibly a physical or occupational therapist can help determine what your needs are in the home pertaining to your medical condition. Family, friends, or significant others can assist you with this process as well, providing feedback as to what may be helpful and needed to complete certain tasks and duties in the household. Whether it is personal care attendance services or assistive equipment devices, there are a range of services that may be beneficial to you. After your needs have been assessed within the home, supportive resources and contacts can be made to identify potential sources of this assistance.

If you have health insurance coverage, a contact can be made to your insurance provider to identify potential equipment items or in-home health care services that may be a part of your coverage plan. Your insurance provider would be able to explain what services, if any, are offered within your particular health plan. In regards to possible community supports, there are homecare resources and service programs offered through county offices in the U.S. called area agencies on aging. These county offices provide information and referral services regarding community homecare assistance to those with disabilities and older individuals. They maintain a database of information for home health services in the area, as well as caregiver resources and support services.

For individuals whose needs may not currently be at the level of requiring additional assistance in the home, it may be beneficial to explore long-term care options to have a plan in place for potential future needs. Researching long-term care insurance coverage options and other benefits can be useful to attain additional information for homecare services. The non-profit organization Life Happens provides education concerning long- term care insurance benefits and ways to find coverage.

If you do find you need additional assistance in the home, it may be helpful to have a discussion with your doctor first in regards to what your needs are, as this can lead to identifying sources of support within the community.

It’s all relative.

Posted on August 13, 2014 by MSAA

Sometimes it may seem like things are spiraling. Maybe the bills are piling up, the stress level in managing home life or work is rising, and you are worried that you are headed for an MS Relapse if you keep going at your current pace. When things feel like they are outside of your control, it is easy to “cycle” or consistently think of the negative aspects of what is going on. The whirlwind of negativity can affect not only your mood and health, but also your relationships and ability to accurately read cues from others and be empathetic.

When your co-worker is acting totally checked out and you are annoyed that she hasn’t helped you with a joint project, you might think she is acting uncaring, but maybe she didn’t tell you her brother is very sick in the hospital. When the dentist office calls for the third time to cancel your appointment and you just feel like screaming at the scheduler, you may not know that she is stressed out because other office staff keep flaking out on their scheduled appointments and making her job harder.

Yes, it is okay to have a bad day or a bad week. It is okay to not put on a “fake it ’till you make it” smile when you feel like nobody understands what you are dealing with, but when you start to get caught up in the negativity tornado and are on the borderline of snapping, remember that everyone is dealing with something. Yes, some of those “somethings” are more manageable than others, but they all impact and make a difference in the lives of the people living them. Focusing on the idea that everyone is living their own journey with different successes and challenges can help us to maintain balance; we are not alone for the ride. When things start to spiral, try to remember that everything is relative.

Communicating Effectively with MS

Posted on July 30, 2014 by Samantha Schech

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purpose

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

You Know You Have MS When…

Posted on July 25, 2014 by MultipleSclerosis.net

People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
The simple task of washing your hair is exhausting
Your kids think that all you do is sleep and that you’re sick all the time
You are so tired that you cry, and no amount of sleep helps
Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
You are tired or fatigued all the time, and you can’t find the energy to take a shower
Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
Feeling well-rested is a thing of the past
You must have a plan B, C, D, etc.
You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
You’re the only one in the room saying, ‘Is it hot in here?’
When 70 degrees feels like you’re standing inside of an oven
When you can’t do any outdoor activities due to the heat
When summer heat hits the triple digits, and you can barely breathe
Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

You can’t play with your kids or take a walk with your husband
You fall over when standing still
Your upper body starts to walk, and your legs don’t get the memo in time
You don’t even realize it when your legs go out from under you
You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
You just tip over when standing still on level ground
When you wake up one morning, and you’re paralyzed on one side of your whole body
You keep tripping up over nothing
You are always dropping things
You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
Your hands are asleep and they don’t wake up
You are eating dinner and your arm suddenly jerks and your food goes flying across the table
You walk like you’ve had a few cocktails, but you haven’t had a sip
You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
You have to stop mid sentence because you’ve lost your train of thought
You take the dog for a walk around the block,and your legs feel like they are encased in cement
You walk like you are dancing to Michael Jackson’s “Thriller”
When your knees are locked as though there’s a magnet holding them together
When you go from 0 to pee in two seconds flat
You have to hold on to walls because you lack balance
You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
You can’t stand without assistance
Your head goes one way and your legs another
You have to look at your hand and tell it to move
When you can’t pass a field sobriety test while sober
Despite only being 41, you walk like your 76 year-old mother
You have to lean your elbows against the shower wall to wash your hair

Your mind isn’t as sharp as it used to be

You lose your train of thought while mid-sentence
You walk into a room and forgot why you went in there in the first place
You have the hardest time trying to say what you want to say, and your words come out making no sense
You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
What was the question?

Pain and numbness become a part of everyday life

Your feet feel like they are on fire or you have frostbite
You are numb and tingly and have burning sensations all over
You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
You feel like you are being stabbed, and you have a tingling feeling all over your body
You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
You “feel” noises that go straight to the bone with subsequent weird pain!
Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

When everyone assumes you are normal and they say, ‘Let’s go – get with it’
Your friends and family think you are fine because you look the same, so they think you are just being anti-social
You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

Change and the Impacts on Your “Self” When You Have MS

Posted on July 23, 2014 by Samantha Schech

“Change is the law of life. And those who look only to the past or present are certain to miss the future.”
-John F. Kennedy

By definition, the word change means to make or become different. But in what ways do we change? When I reflect on my life, I don’t think of my current self as any different from my past self. Certainly I have learned from my mistakes and have adapted, but I still think of myself as the same person I was many years ago. Maybe my taste in music or my physical appearance has changed, but morally and ethically I don’t think I have changed much.

Sometimes a chronic illness like MS may impact an individual’s views of themselves. By focusing only on the past and how MS may be impacting the present, like John F. Kennedy stated, you may “miss the future.”

I think that this quote is pretty powerful and allows for the opportunity to really think of who we are and what attributes of our “self” we consider important. In certain ways, all people may change over time, but focusing on the positive attributes of your life allows you to honor them and your sense of “self” and will guide you into the future.

What parts of your self have remained un-changed? In what ways are you honoring your self?

Getting Graphic When You Have Multiple Sclerosis

Posted on July 21, 2014 by MSAA

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

You’re My Person…

Posted on July 18, 2014 by Angel Blair

So in our day to day we sometimes overlook things that are important to us. It’s not done on purpose or due to an act of spite; it’s realistic that things get pushed to the side when we have so many other things going on. In a world such as ours with life going a mile a minute, how can things not go unnoticed? But when you do have time to talk, to listen, and be with someone else, who brings out the best of who you are? Who’s your person? Who is that being you turn to when you need someone to confide in? What is it about this person that makes you feel so comforted in communicating with them?

Every individual is different; thank goodness for that! It’s a person’s quirks, attributes, and strengths that attract us to them in the first place. We like when someone is different from us so they can offer new perspectives on things, but we also like when we share the same interests and personality traits that make the relationship flow so well. We tend to look for connections that will hopefully bring out the best in us – someone to complement our traits and allow the best part of us to shine through. We confide in others when we need to vent, discuss things out loud, and find validation for what we’re going through. It’s comforting to know that someone else is there when we need to reach out.

Your go-to person may be a family member, friend, significant other, or someone else – the relationship title doesn’t make a difference. It’s the communication and bond you share that matters. Family members may drive you crazy at times, but sometimes they’re the ones you’re closest to, without even realizing it. If you are still looking for your ‘person,’ that one who you can confide in and turn to in times of need, take another look; they may already be a part of your life…..

Who’s your person?

Identifying Communication Barriers

Posted on July 16, 2014 by Samantha Schech

Throughout our lives we have all experienced a time or two where a complete lack of communication has occurred and something has gone wrong, whether someone didn’t get the toilet paper at the store, or someone forgot to pick the kids up at daycare. It’s often easy to say that there is a communication problem, but finding a solution or working towards improving communication is a whole other beast to try and tackle.

Identifying that there is a communication problem is the first step in correcting it. It may also be helpful to try and determine the type of communication problem you are having. When specifically talking about relationships and communication, the following are some of the more common communication problems that can be seen:

The “assumers”: those who think they know what the other person is saying or thinking, but don’t ask how they are feeling. Most commonly you will hear from these individuals something along the lines of, “Oh, I don’t have to ask him/her, I know what they will say.”

Those that “read between the lines”: these individuals create false scenarios about every possible answer, thought, or feeling that could be occurring in the other individual. Most commonly, these are the “what if” individuals, who you will hear say things along the lines of “when he/she says ____, do you think they mean ___ what if they really think____?”.

The “keep quiet and this will pass” type: for this type of individual, it is the complete lack of communication that leads to more issues in the relationship. These individuals choose not to pose questions or speak to their partners in hopes that things will get better on their own.

These are just a few examples of some of the communication challenges that individuals may face. It can be difficult to think of ourselves as doing something bad or wrong, or in any way hindering our relationships. But I encourage you to look at your current relationships and think about how your communication styles may be influencing the relationship. In what ways can you see yourself making changes? Have you found something that works for you and your partner?

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