A common misconception with MS is that the disease affects the body mostly in just the physical sense. This can be true for many diagnosed. However, one’s mental health may be impacted as a result of MS too. MS and its unpredictable nature can create a roller coaster of emotions, changes, and ups and downs for those affected. That kind of ride can impact all parts of one’s mind and body. Understandably so.
It’s not always easy to recognize or bring attention to Continue reading
When talking about MS symptoms, many know how different and varied these can be with the disease – from the different types that can occur to their various degrees of severity, what affects one person can be very different to another. The symptoms that MS causes can not only have impact on the person experiencing them, but on those around them as well. Certain symptoms can impact relationships and unfortunately, once again, MS acts as if it has complete control over all facets of one’s life, but this is not the case. Not when individuals can do things and make choices to manage these symptoms and work hard to combat them as much as possible. It’s not easy or always a possibility, but MS has to know that it’s getting a fight from the other side and the disease is not always going to be victorious.
One of the MS symptoms that can have direct impact on relationships is issues with sexual dysfunction. This is usually a less talked about symptom and one that many shy away from discussing or disclosing. But it is one that deserves attention and awareness, because many can experience it and it’s important to know they’re not alone in this. It’s bad enough that MS causes symptoms that can impact daily routines, schedule, work habits and other factors, but really—does it also have to come between individuals sexually, in their most private moments and encounters? Come on MS, do you mind?
For those who have experienced these symptoms, one key element to battling MS in this scenario is communication. Again, we know this can be uncomfortable to disclose and openly talk about, but if these symptom issues go unaddressed, the persons involved in the relationship may not know or understand what’s going on, and if not given a chance to learn or be aware of it, it’s hard to move forward and manage with it together. Talking about it with a doctor or counselor can help to create a safe atmosphere to openly discuss what’s going on and brainstorm strategies and ways to help manage it. There can be other ways to help improve intimacy and interaction between each other, but it starts with recognizing the issues that are at play and what’s influencing them, because different factors in MS can attribute to these sexual dysfunction symptoms.
Again, MS may think it dictates everything that occurs in one’s everyday life, but there are some things that it really has no business being a part of…
Someone you know has just been diagnosed with multiple sclerosis. You’re not alone if you are one of the many people that aren’t sure how to approach this situation. ‘What should I say?’ Or ‘what can I do?’ are questions often asked and contemplated by those surrounding an individual who has been diagnosed. Unfortunately there is no specific script or dialogue mapped out that can guide this interaction, however, there are some things to consider when communicating about MS. Being mindful, respectful, and considerate of others’ feelings and sensitive to the circumstances are good starting points in this situation.
If you’re not familiar with MS and do not understand the disease, this is ok. MS can be a challenging condition to absorb information about and there is a significant learning curve when it comes to educating oneself about the disease. It’s not something to be learned overnight, so knowing this going into the situation can help reduce stress and expectations. Telling the other person you’re not sure what MS is but showing interest in how they’re feeling and learning about the disease can open this communication exchange. Sometimes just saying ‘I’m here for you, and if you want to talk I’m happy to listen’ can make the other person feel comforted knowing they have support if they need to reach out.
Many people may feel pressured to not say the ‘wrong thing’ or worry if they don’t react in a certain way when hearing of an MS diagnosis. This can sometimes circle back to your relationship with the individual who has been diagnosed and how you’ve interacted and communicated. You may already have an idea of what would be helpful for them to hear or to not hear in the situation. Your relationship with the person has not changed, so maintaining a balance of support and a matching bond as before can help steady this novel circumstance. Validating their feelings and the symptoms they talk about experiencing can help guide the conversation; be sure to listen and engage with them so they know they’re being heard.
Often the person diagnosed with MS may need time to process the news of a diagnosis, and this may lead to them subsequently distancing themselves or refusing help from those around them. You can’t force someone to ask for or accept help, or push them into disclosing their feelings. So in these instances telling them ‘I’m here if you need me,’ and ‘I care about you’ can be a support in itself—and knowing they have supports in place when needed can be reassuring to those diagnosed.
The diagnosis of a chronic illness such as multiple sclerosis (MS) has the capability to challenge a family on multiple levels. As if the diagnosis of a disease such as MS was easy to explain and discuss with adult friends and family members. Explaining the diverse symptoms of MS to a young child is a new challenge all in itself.
Deciding when to have a conversation with your children regarding the MS diagnosis is a personal decision that every family should discuss. Children are by nature, curious individuals. They may pick up that things have changed, or that Mommy or Daddy is acting differently. Depending on the child, some families may choose to introduce information about the disease early on.
MSAA has published two books to help guide families through this conversation with young children. Mommy’s Story and Daddy’s Story are geared for children age’s three to seven, to provide a starting point for future conversations regarding an MS diagnosis.
For on-going supportive information for children, the National MS Society also publishes a newsletter, Keep S’myelin to provide stories and activities regarding different challenges a parent may face with relation to MS.
If a child appears to have a difficult time with the adjustment to a new diagnosis in a parent, it may be helpful to seek additional professional support. A child therapist can help the child to express some of the fears or concerns that they are having. Different modalities such as art or music therapy can help young children who may not verbally be able to explain how they are feeling.
Do you have young children, and have you spoken with them regarding an MS diagnosis? What resources were helpful to you during this time?
It’s all the rage these days – communicating to others through technology channels, especially online. Gone are the days where individuals only communicated in-person or by telephone. Now interacting with others may still involve a telephone, but mostly by way of text messaging and social media platforms do people stay tied to others.
Using online communication systems to interact has been steadily increasing with the technology age and will probably continue to do so. Individuals in the MS community use various types of online platforms and discussion groups to discuss MS-related topics and interests with fellow members of the community.
As this online communication trend continues, what are some ways to ensure your safety and comfort level when accessing these portals?
Read and review. Be sure to read and review any website and social media platform policies when engaging in online interactions. Your privacy is important, so be cautious of what information you share online and how it will be shared with others; only share and disclose what you’re comfortable with. Use discretion if disclosing personal details or identifying information about yourself. You want to ensure that your safety and privacy remain a priority when connecting to others.
If some type of interaction feels ‘off’ in some way, be mindful of that feeling and try to take the appropriate steps to disengage if necessary. Remember why you reached out in the first place, if you feel as though you are not getting the support or information you need, or that conversations are not healthy for you, you have the right to leave the conversation.
Communicating online can be a supportive and dynamic experience, so just be sure to do so safely and appropriately.
In honor of National Love Your Pet Day, the “unofficial” national holiday set aside to give extra attention to and pamper your pet that you love every day. This is a good day to focus on the special relationship that you have with your pets.
Having a pet has proven to provide many physical as well as mental benefits. Therapeutically, a pet can lower blood pressure and have a calming effect over an individual, which can lead to diminishing some pain symptoms. Pets also encourage communication (who doesn’t talk to their pet), as well as provide support and comfort.
When feeling anxious or nervous about a new situation, perhaps lean to your pet for support. A pet is a perfect soundboard for thoughts and feelings and even better, they can’t talk back! Maybe there is an uncomfortable topic you wish to discuss with a loved one, try practicing speaking out loud to your pet exactly what you wish to say. The extra practice in expressing your thoughts can provide confidence and re-assurance in the situation.
While your pets can’t role play the situation back with you, having practiced saying a thought or feeling may help alleviate some of the anxiety around the situation. It may also provide you with the opportunity to hear how your words would sound to another person. Have you ever made a comment and then realized ‘that wasn’t what I meant to say.’ Practicing beforehand allows you to make changes to ensure that your message is properly received.
In what ways is your pet a support to you?
By: Matt Cavallo
During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.
While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.
Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.
However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.
If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.
Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.
Resource:
https://mymsaa.org/journey/
*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/
Sometimes you may feel like you are talking at someone. As if the things you are saying hit an invisible force field and bounce back toward you with no impact on the person you are speaking to. When this happens it can cause feelings of frustration.
You may think: Are they even listening? Do they care? How do I make them hear what I am really saying (and not just what they want to hear)?
Communication can be difficult when the person you need support from is on a different page. You may feel they are unresponsive, unrealistic, or uncaring. The other person may be thinking about something totally different, they may be unmoved by your appeals, think you are incorrect in your logic, or something else entirely.
You can only do your best to communicate your needs and sometimes you may not get those needs met. Why, because communication is a two-way street. Talking at someone rarely effects change. To make a difference it often requires both sides to give a little and meet somewhere in the middle or for one person to make concessions to another.
When no one gives a little, situations can explode. For example: “I need help with the laundry, it’s getting too difficult to carry it up and down the stairs” over time can turn into “You didn’t change the laundry again. Do you even care about my fatigue and how that makes me feel?”
Or “Doctor xyz about that medicine makes me really uncomfortable.” Response: “You will take the medication prescribed, I’m the expert here.”
If both sides can collaborate and agree to a plan of action it may result in a better outcome. “Let’s make a plan for you to help me with the laundry every Monday so we can all have clean clothes for the week.” “Okay, but if I forget please just remind me when you want it done before getting upset.”
Or “If that doesn’t work then let’s talk about what other options for treatment we have available and try to select something we can both agree on.” Creating a clear plan of action can remove frustration and set realistic expectations for each party.
If ultimately, the other person refuses to listen or budge on an issue you may have to try and get your needs met in other ways. “My mom agreed to come over to help wash the clothes” or “I’m finding a new doctor.” As you can see in some circumstances seeking other support can help to resolve the issue but sometimes at a steep cost.
If you run into a situation where someone will not meet you in the middle you will need to review the pros and cons of your alternative options and remember that communication is a two-way street.
The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?
A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.
Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.
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/