We are a just a few months shy of seeing the end to 2020, and I don’t know that that’s necessarily a bad thing. To say that we’ve encountered our fair share of change this year is a massive understatement. The entire world shifted, and we essentially had to alter how we live and interact with one another. It was a change we didn’t see coming, but one that we had to adjust to quickly. We were given no choice and had to modify our day to day and try to make the best of an unpredictable and uncertain situation. Not unlike Continue reading
By Jarely Meza
Some of us have been in the situation where a loved one has experienced a health problem, a sickness, addiction, or recent medical diagnosis and they are too stubborn or proud to admit this, let alone ask for help. As care partners we feel that it is our responsibility to push them to get help – to remind them about setting up an appointment, or to even try and convince them to go see someone about their situation.
Often someone who may be in denial will Continue reading
In a recent article posted on MultipleSclerosis.net, author Kim Dolce describes her first appointment with her neurologist upon receiving her MS diagnosis. The doctor began questioning her history of childhood illnesses—and this caused the floodgates to open. She realized she had been living with MS for decades. Suddenly, the pains she suffered in her legs at age 8, and the loss of balance that caused a bike crash at age 12 made sense.
Looking back, she could see that these previously inexplicable problems were no longer inexplicable. This disease had been part of her life all along.
Learning this doesn’t necessarily change her treatment plan, but it does bring Dolce some clarity along with some peace. Her past makes sense.
We recently posted her article on the MultipleSclerosis.net Facebook page, and asked if you related to her experience. More than 100 of you reacted to the post, and many of you commented.
Here’s what you had to say.
“I can remember the aching legs from age 8.”
For many of you, Dolce’s article brought clarity to your own pasts, making sense of events and experiences that otherwise went unexplained. Because you didn’t receive the diagnosis until much later in life, you went through childhood and early adulthood with pains and aches that didn’t fit with what the doctors said. At the time, the pain brought confusion and frustration.
“I was diagnosed at 59, but when reading the above article, I can remember the aching legs from age 8 or so every night, sobbing my heart out and the doctor telling my mother that it was growing pains. That could very well have been the first sign that I was a candidate for MS!”
“I fell often before doctors knew what the problem was.”
“I’ve had undiagnosed symptoms for 40+ years.”
Unfortunately, this scenario seems all too common: That many of you lived with symptoms for decades. As challenging as the physical symptoms were and are, the problem was exacerbated by the not knowing. There’s no community of people to relate to if you don’t know what you’re dealing with. Often, there’s less empathy for problems that don’t come with a diagnosis. Many people find it hard to understand or relate to pains and problems that aren’t named. And only when there is a diagnosis can people understand what is happening to you.
“I’ve had undiagnosed symptoms for 40+ years. I was only recently diagnosed in 2016.”
“I was diagnosed back in 1987 couple flare-ups then and one about 25 years ago. Nothing since but extreme bouts of fatigue!”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening.”
Although getting the news of your diagnosis is never easy, for some of you, the diagnosis was a turning point that brought some relief. The diagnosis meant that you now knew what you were dealing with. There was suddenly a map—a direction that others had taken, so at least you knew how to handle this place called MS.
“Wouldn’t have helped knowing early in because there was no treatment. Soon as I was diagnosed, I began treatment, which helped immensely.”
“Now that I know what’s going on, it’s a lot easier to accept what’s happening with my body. I may not like the diagnosis, but I can now get the proper treatment for my future.”
We want to say thank you to everyone who participated in this ongoing conversation about MS. We hope that this post, as with every other one we share, serves in shedding light on the experience of living with MS, and fosters a sense of connection and community among readers.
Everyone’s lives are very different and unique. But when it comes to certain experiences we can all relate to one another in some way. Many have had the unfortunate and shared experience of moments that are unexpected, uninvited, and honestly, unwanted during the course of life.
For individuals diagnosed with a chronic illness like MS, acceptance is not often the first thing on their mind. Questions, doubts, Continue reading
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.
There is often an unspoken understanding among people who have been diagnosed with MS, but it can be quite difficult for those without this condition to fully comprehend what day-to-day life is like for someone with MS. The effects of MS are far-reaching, impacting individuals physically, cognitively, and emotionally, with symptoms often unseen.
We asked the MultipleSclerosis.Net community what they wished people knew about what it is like to live with MS and to share some of the common misconceptions associated with this condition. More than 300 responded with insightful feedback. Here is a summary of the responses we received from our community members:
MS is real, not an excuse:
- No one chooses to have MS, nor can we control how it affects us
- Not all MS symptoms are visible; you may look okay on the outside, but feel like you are falling apart on the inside
- People often make the assumption that we are faking our symptoms or that we are hypochondriacs because they can’t see what we are experiencing
- The limitations associated with MS aren’t necessarily visible, and it’s not possible for others to push us past our own limits
- MS can be both extremely painful and exhausting, and at times we just need to rest
MS is unique to each person and is not predictable:
- Every patient experiences MS progression at a different pace; it is not a “one size fits all” condition
- Symptoms can change daily, or even hourly
- Having MS can be a roller coaster ride with ups, downs, twists, and turns, but there is nothing fun about it
- It is impossible to understand what it is like to live with MS unless you actually have it
- It may seem like MS is trying to take away your self-worth every day by slowly making you unable to do the things that you were able to do yesterday
- Even if yesterday was a particularly difficult day, today may be better
- MS can knock you off your feet – literally and figuratively
It can sometimes be both stressful and depressing to have MS:
- MS can take away our dignity by slowly and quietly taking away our mobility and cognitive thinking
- MS is a multifaceted condition that can be incredibly difficult to live with; it not only affects us physically, but mentally and emotionally as well
The effects of MS are constant and can impact more than just the individual with the diagnosis:
- We never stop thinking about our MS, even when we are feeling well
- MS diagnosis can be devastating, affecting both the patient and his or her loved ones
- We need our friends and family to be open-minded and understanding
There is no cure for MS, but it is not a death sentence (and can make you stronger in many ways):
- There is a continued need for research with the hope of one day finding a cure
- There is no miracle potion that will cure MS
- MS doesn’t change who a person is, but it can change what a person is able to do
- Hearing a doctor tell you that you have MS can be incredibly frightening, but over time, people with MS are able to educate themselves about their condition and face it head-on
- MS isn’t always debilitating
- It is not contagious
- MS is associated with many challenges, but these challenges can ultimately make you stronger
What do you wish people knew about MS? What do you think are the most common misconceptions about MS?
March is MS Awareness Month. As an advocacy group, you will hear MSAA discuss our available resources, and encourage you to get out and be active about raising awareness for MS and supporting programs which benefit individuals with MS. We will promote and support expanding knowledge and information about MS. With all of that going on, it might feel like you need to wave a flag shouting, “HERE I AM. I HAVE MS!!!”
As the Manager of Client Services at MSAA, I wanted to acknowledge that there are times when you (or your friend or family member) may not want others to know about a diagnosis. While you may want to be an advocate to spread awareness and information to help people understand about MS, you may not want certain people (i.e. an employer, a new boyfriend, or a casual acquaintance) to know you or a loved one has MS.
There is nothing secretive about a diagnosis, but it is your (or your loved one’s) own personal health information. While some people might share that they had a heart attack or stroke with anyone they meet, others might feel medical information is no one else’s business and only talk about it with a doctor or close family member.
So, if you want to be an advocate but not shout a diagnosis from the rooftops, what can you do?
On social media sites:
Think before you post. Are you comfortable with everyone seeing your update or picture? If not, make sure to check your privacy settings before sharing personal (health-related) information so that only people you want to learn about your private information, such as close family or friends, can see your updates and pictures.
If you want to talk about MS in the community, know that not everyone who spreads information and encourages activity for a cause will be personally affected by it. If you don’t feel comfortable sharing your diagnosis, make it general: “ I’m helping out with a cause… Can you help too?” or: “There is a charity I support, and I wanted you to know about them and what they do” are generic ways to introduce information about “your cause,” even if you don’t want anyone to know it is personal.
In many of these situations, there may be a future point in time where you might want to share a diagnosis. On the job, you may decide to ask for a reasonable accommodation and share a diagnosis when needed. When your boyfriend goes from being casual to serious, you might feel comfortable disclosing. Likewise, if a casual acquaintance becomes a good friend, you may want to share. If not, there is no pressure. You can still be an advocate for MS without disclosing a diagnosis.
By: Matt Cavallo
When I was diagnosed with MS in the spring of 2005, I was completely devastated. In my darkest hours, I believed that my hopes and dreams were over. I was convinced that I was going to lose my job and wouldn’t be able to pay any of my bills. I thought that Jocelyn, who was only 27 at the time, should leave me and start over with someone who didn’t have a chronic illness. I didn’t think it was fair for her to care for a sick man at such a young age. I also didn’t think that we would be able to have children. Not only was being a dad a dream of mine, but I didn’t want to deprive Jocelyn of the joys of motherhood. Or if we were able to have children, I didn’t want to be a burden on the family and have my kids growing up with a disabled father.
I stayed in this depression for months after my diagnosis. I built a wall around me and pushed everyone out to the periphery. Multiple sclerosis had changed me. The man in the mirror no longer looked like me. My spirit had been drained and replaced by a pale, sad man with raccoon eyes. Not only did I not look like myself, I wasn’t acting like myself either. I was becoming short with people and increasingly negative. Other times I would be quiet and retreat within myself. Being an extroverted conversationalist, those around me at the time couldn’t figure out why I wouldn’t carry on a simple conversation.
A lot of it had to do with how I felt the world around me perceived me. Many people who talked to me after my diagnosis weren’t sure what multiple sclerosis was and expected me to be in a wheelchair when they saw me. Others would say positive things like, “you look great” or “it could be worse”. Most compliments ended up making me feel worse and more isolated. I felt like no one, not even Jocelyn, understood me. I felt like I was alone on an island and that no one else on the planet knew what it felt like to be me.
As soon as I was able to operate a car again on my own, I drove by myself to a beach I had often frequented as a child. I needed to be there by myself, alone with my thoughts. I sat behind the wheel of my Ford Ranger in a parking space near the beach wall and looked out towards the ocean. Trying to make sense of my diagnosis, I watched the waves crash.
Between the sound of the waves, a song popped into the jukebox of my mind. It was a familiar song, one from my youth: Moon Shadow, by Cat Stevens. I started humming the lyrics to the chorus, but couldn’t remember the words. I needed to know why I was thinking about that song at that moment. I sped off toward my parent’s house and grabbed the Cat Steven’s Great Hits CD from their collection. I then got back in the truck and drove with Moon Shadow on repeat.
I listened intently to the song and concentrated on the message behind the lyrics. The lyrics spun a story of a man who lost his legs, eyes, hands and mouth. It struck me that I could lose these same functions because of MS. I realized that the initials of Moon Shadow were MS. Then it hit me: I was being followed by a Moon Shadow. A wave of emotion hit me. I was too young to be disabled. There was so much I still wanted to accomplish in life. I felt lost and scared for what my future held.
As I listened to Moon Shadow for the seventh time in a row, my panic turned to calm. Although the man in the song knew he could lose all these physical functions, he was going to be alright. That was the first time I realized I’m going to be alright too.
I was still too overwhelmed at that time to communicate my fears and feelings to others, but I did start to journal and capture my emotions on paper. Slowly over time my notebook of blue-lined paper transferred into my memoir, The Dog Story. The Dog Story gave me a voice and the confidence to help others who were living with a chronic illness and experiencing the same things that I did. I want other patients to know that they are not alone. Most importantly, I want to share a message about hope, the powers of love and finding strength in your darkest hour.
Today, I no longer feel ugly, isolated or alone. I am living a life that I never dreamed possible. Jocelyn never left me despite my attempts of pushing her away. Now, we have two beautiful boys that our world revolves around. I am the dad that I always wanted to be coaching their baseball teams and doing normal dad stuff. My career is helping other people like me and using the story that I was once ashamed to tell to inspire others that if I can do it, they can too. I still walk my dog every day, whether I feel that I am strong enough or not. And while driving during time of quiet reflection, I still find myself humming along to Moon Shadow. And I am thankful.
*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/