Featuring Barry A. Hendin, MD
Question: Is anxiety a common symptom of MS, and if so, what are the signs and symptoms?
Answer: Anxiety is, indeed, a common symptom of MS. It is estimated to occur in almost half of the MS population, at some point. It often coexists with depression but can occur independently of depression. Unfortunately, anxiety is under-recognized and undertreated due to the clinical emphasis on depression alone.
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On the MSAA helpline we are often asked the question if depression and anxiety are common with MS. Those diagnosed and/or their loved ones reach out wondering about these symptoms and if others experience them too. The answer is yes. These symptoms can be very common with MS and are experienced by many with the disease. Questions about why and how, are ones still being researched to this day. And in a year like we’ve had, will probably be highlighted even more so moving forward.
There are many factors that connect these symptoms to MS and the disease course. MS can affect parts of the brain that help to control and regulate emotions and behaviors. Side effects of medications, other symptoms, and changes in the body due to MS can also contribute to depression and anxiety. And let’s not forget the general life stressors and daily changes encountered all the time.
Learning that depression and anxiety are common with MS and happens to others can help to alleviate some of the stress and burden felt when questioning the symptoms. And though that doesn’t always necessarily make it easier to cope with or manage, finding validation and support are definitely helpful keys. The first step is talking about it. Finding someone trusted to confide in and disclose what you’re feeling is an action you owe yourself to take. There may be things that are out of your control when it comes to MS. But your ability and strength to share what you’re feeling is not lost.
If you’re experiencing symptoms of depression or anxiety, or even if you’re really not sure what it is that you’re feeling, talk to your doctor. Be open and honest about what’s going on. If you or others around you have concerns or questions, bring them up. And if you feel embarrassed or ashamed to talk about symptoms with certain people in your life, then choose that one person you know will listen without judgment and that you would trust. Whether that’s a medical professional or starting the conversation with someone close to you. Do yourself that justice and reach out for support. There are many ways that depression and anxiety can be treated and managed, and you deserve to have it be so.
Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.
We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.
Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.
“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”
No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.
“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”
Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.
“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”
The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.
“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”
Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!
Many people who have pets will admit that they do not need an excuse to give their pet extra attention and a little pampering, but did you know that there is a National Love Your Pet Day coming up on February 20th?
Having a pet or any kind of animal companion can offer a variety of benefits to anyone. Whether you are cuddling with a furry family member, or confiding your fears and frustrations to an attentive animal, our pets can reduce our stress levels, providing both physical and mental relief. Who hasn’t come home after a long day with a desire to just say hello to your pet, give them a pat on the head, or a belly rub? We can vent our frustrations and acknowledge the things that make us nervous and anxious to our pets, without fear of being judged for our thoughts. They support us without ever needing to actually speak back to us.
As some of our My MSAA Community members have said about their pets:
“Gidget is waiting for me every time I come home. No matter where I’m at she finds me. She is wagging from head to tail. I swear she knows when I’m sick because she follows me around like my little shadow.”
“My dog Razor has seen me through 5 ops in 5 years, never left my side.”
“My little kitty girl, Tux, is my daytime companion. She follows me around and sometimes even rides on the back of my chair. We like to sit in the sun and watch the birds in the trees in the backyard.”
Our pets are often considered an extension of our family and can easily be considered a care partner for many of us when we aren’t feeling our best. How has your pet been there for you?
So the holiday season is here and for some of us that means a lot of extra time spent with family. Now for many people this is a welcome and joyous gathering; spending time with loved ones and those you may not see all year round is longed for and appreciated. For others, being with family may be a bit more stressful, so one’s strength and will can find that it’s tested more so this time of year. Now don’t get me wrong, I’m not saying that all family occasions and activities are taxing, they can be very pleasant at times, but there are those moments where we find ourselves maybe wishing we were at Ebenezer Scrooge’s house for Christmas dinner (the Ebbie we see before his change of heart, lol).
I think most of us can relate to those relatives who can bring out the worry, stress and anxiety in us—and for whom we do our best to place a smile on our face and grin and bear their remarks and actions because they come from a place of concern. I know some say that family only wants the best for us, but do they have to work so HARD at it? Tough questions, unrealistic expectations and lingering comments can be very trying to endure, especially for those coping with their own changes or challenges and expectations. No one’s arguing the fact that we do ultimately want to treasure and appreciate the moments we have with family, because we all know that special moments can be fleeting and life can be very unpredictable when it wants to be. But why do some of these moments have to be so hard sometimes? Why can’t we get through a meal or activity without that moment of discomfort because someone asks an unwelcome personal question or comments on something they don’t know anything about?
Again, I’m not saying that all family get-togethers and events bring about these types of feelings; I’m merely trying to validate that these moments do occur for some and they are not without frustration or stress. The question is; how do you approach these more interesting of family encounters, especially around the holidays? What would Ebenezer do? (The changed Ebbie at the end of the tale, that is).
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/
The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.
We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!
Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story
Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story
Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story
Read the latest issue of The Motivator
Stress is something that everyone confronts in their lives. Stress broadly falls into two categories – external stressors where another person or entity is pushing you harder and asking for more, more, more (more of your time, more of energy both physical and mental, and more than you can handle). I think everyone is familiar with the external stressors- a school deadline, a boss that keeps piling more on your plate, appointments and activities you need to get to…these can all add external stress.
The other lesser acknowledged form of stress stems from internal pressures. Internal stress arises when you place restrictions, parameters, and deadlines on yourself, where you strive harder and work longer and try to be “perfect” or to be everything you think you can and should be for everyone and more.
I’ll give you an example. The schedule says you work from 8-5 and get an hour for lunch, that is the schedule you are paid for BUT the phone is ringing, and a new project is assigned, and the work is piling up (external stressors) so your internal response is to come in a little early and only take 20 minutes for your lunch breaks and maybe on some days you stay a little later too. Before you know it you are working 5-10 additional hours each week. Sure you are getting the work done but you aren’t being compensated extra, and everyone else is taking their lunch breaks.
Sometimes people use internal stressors because they are motivated by something specific (i.e. if my boss sees me accomplishing so much maybe I can earn the promotion, and some day make it to the corner office) or maybe you love your job and are motivated by what you think you can accomplish (i.e. I’m saving the world one day and one life at a time, GO ME!) but whatever the reason at some point those additional self-imposed stressors will catch up to you. And frankly at the end of the day while your boss might acknowledge all of your hard work it is just as likely that they will raise their expectations of you, so that without a big promotion you are stuck doing all the extra work and if you try to cut back on the “extras” your boss may wonder why you can’t accomplish what you used to!
These internal stressors don’t just apply to the workplace, they may cause anxiety over what you need to do-“I’ve got to clean the house before Janice comes over to visit, but when will I have the time and energy.” If Janice is truly a friend she will understand that life got in the way and that your house can’t always be impeccable. Don’t worry, Janice already knows that you are human.
You may be asking why is it important to acknowledge when a stressor is internal or self-imposed and try to reduce those actions or thought patterns. Stress is well known to impact health. Stress has been attributed to developing or exacerbating changes in mood such as increasing worry/anxiety, but stress has also been linked to physical health including affects to sleep, cognition, and increasing levels of burnout/fatigue. On the more severe end of the spectrum, stress has been linked to heart attacks, ulcers, and has also been correlated with MS Relapses among other health issues. So, while you may not be able to stop your boss from dumping 500 projects on your desk or keep your house in a perpetually spotless state, you can put in place an internal protection system: Remind yourself that there will always be work for tomorrow no matter how much work you do today, and that friends, family, and neighbors don’t expect you to be “perfect.” Finally, let yourself know that it is okay to ask for help when you need it. Don’t be your own worst enemy, prioritize your health and try your best to stop or reduce that internal voice saying and, AND, AND.
