Coping with Toxic People in Your Life

Toxic people are completely exhausting and harmful to be around. Not only this, but they can also have a negative impact on your health.  Dealing with such individuals on a daily basis is unfavorable for anyone’s health, but it can be even more damaging if you are battling a chronic condition like MS.  As most of our community members realize, living with MS can make life difficult and can require a great amount support from those around you. When one’s support system becomes anything but supportive, it can have a damaging impact on your well-being.  We at MultipleSclerosis.net recently posted an article about the presence of toxic people in life and how to deal with them, and received an overwhelming community response. We had such a large response, that we wanted to capture some of those experiences, advice, and stories and share them with you!

Identifying toxic people and their behavior is important

There may be individuals that shrug off your condition as unimportant or unreal. They can’t even begin to understand what you are going through. These types of people can be dismissive and compare whatever you are going through to their situation. Identifying and avoiding these people (if possible!) is key.

“I have one person very close to me that just doesn’t get it, actually refuses to believe that I have MS.”

“Dealing with this is not fun; my so called friends don’t like to talk about it or hear about what I am going through.”

“I can’t work and my ‘friends’ call me lazy.”

“I hate it when my family members say, ‘You don’t look sick.’”

“My Mom tells me when I’m having a bad day to, ‘just stop thinking about it…If you don’t think about it, it will just go away.’”

“Comment made to me by an insensitive friend ‘Everyone has their burden’…..”

“I get it all the time, I mention I am tired … they are just as tired.  I mention my forgetfulness; they are just as bad. I mention my pain and theirs is worse.” 

“I hate when people say, ‘I get tired, too.’”

Toxic people don’t take the time to understand

Toxic people make you feel like a burden, and are generally unsupportive. These negative feelings are expressed not only verbally, but with actions as well.  These types of people don’t take the time to learn or understand what you are going through. If possible, it can be an incredibly healthy decision to avoid these individuals who don’t take the time to learn about what you’re going through, or who make you feel like you are too much effort to be around.

My Mom met a woman with MS and said ‘she seemed ok and active…You need to be more like that.’”

“It’s so not worth saying anything to anyone because they just don’t care enough to learn about MS.”

“Somebody told me once to ‘pull myself together.’”

“They just don’t get it or even try to get it!

“My husband has MS. His adult children refuse to see or understand how disabling his MS is. It is very frustrating”

We all know someone that is potentially toxic, and they can bring you down and affect your health and well-being.  How we learn to live with these people is up to us.  If at all possible, try to surround yourself with positive, supportive people who are better for your health and well-being. These individuals can make any day seem brighter and remind you that you are not alone in this. If you’re still searching for individuals like this in your life, or just want to expand on the network you have, our community is always open to new members, stories, tips, and ideas! We’re always here for you!

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Relationships and Multiple Sclerosis

By Ashley Ringstaff

Living with multiple sclerosis is life changing for the person diagnosed, but it is also a change for our loved ones as well. I often tell people that my loved ones “Live with MS” also, because it is now a part of their lives for the long haul. It’s a learning experience and modification time for all involved. Things change when we least expect it as well, that will need modifications along the way. Meaning, if we relapse, new symptoms occur, etc.

I can honestly say that when I was first diagnosed that I pushed people away, especially my husband. I was only 22 at the time of diagnosis, and I felt like I didn’t want to make him deal with this at such a young age as well. Luckily for me, he is very stubborn and didn’t allow me to push him away, and for that I’m grateful.

There were people close to me at the time of diagnosis, which I no longer associate with. It was not my choice to no longer be friends with them, but things happen. It hurt, to have people abandon me at such a crazy time in my life. I understand now that not everyone can “handle” multiple sclerosis, even indirectly.

The state of mind I had when I was first diagnosed – I was very depressed, as well as angry. I couldn’t even tell you which emotion I was feeling more of at that time. They were pretty much dead even, but one would be more prominent at times, depending on the situation.

Many people, including myself, will tell you that you find out whom your true friends are when faced with such a life-changing event. I’ve made new friends since my diagnosis, and I have come to tell people straight off the bat that there will be times that I have to cancel last minute on plans, or I can’t give a 100% answer on if I can go to an event or not, because it all depends on other factors. Is the event outside, is it very hot outside, etc.

If you’re reading this, and you are in a relationship with someone that has MS, please be patient, especially if they are newly diagnosed. For those of you that are friends with someone that has MS, in a relationship with them, related to them, etc. Please be patient in general. Also, take the time to try and understand what we’re going through as best as you can. It makes it easier for us to vent and talk to you, when you have some sort of knowledge about multiple sclerosis, and how it affects us on a daily basis.

I have a friend that I don’t get to see as often as we would like, but she still texts me or calls me just checking on me… seeing how I’m doing… Do I need anything? I can’t even being to explain to you how much that means to me, and to many others living with MS. Just having someone there for us, it can mean the world.

For those of you that have been diagnosed with Multiple Sclerosis, you are not alone. You have so many of us out here in the MS community that will be there for you and talk to you, and just let you vent… we may need to vent in return. I’ve had so many people message me on social media, and are so glad that they have someone to talk to about this illness, that “get’s it”. Also, know that those around you might want to be there for you, but they just don’t know how. You need to let them know what they can do help you out, or even suggest some things they can read, etc. I know it’s easy to isolate ourselves, to avoid people leaving us in the long run… but then you have no one there for you in the end.

There are so many resources out there that offer ways for you to build relationships with others living with MS in your local community, online, etc. Here is a listing of the organizations apart of the MS Coalition, click here. Here is another listing as well, click here.

Whatever you are feeling and/or going through, it is never ‘wrong’. You have the right to feel certain ways, and we can’t control the way MS affects each and every one of us. We are all affected differently, but we are all in this together. I can honestly tell you that many people that I’ve spoken to with Multiple Sclerosis, want to hand out the “MS &Things People Should NOT Say” list to their loved ones, and other articles I’ve written on MultipleSclerosis.net. There is also a list my good friends and fellow writer, Cathy Chester wrote called, “What People SHOULD Say to Someone Living with Multiple Sclerosis.” This is a good article to read for the friends and loved ones of someone living with MS.

I hope you enjoyed the article, and please feel free to reach out to me on my Facebook page if you ever just need to chat.

*Ashley is a 29 year old from Central Texas, that was diagnosed with RRMS in August 2010, at the age of 22. She is a mom of two boys and loves to read & write in her spare time. Ashley is a blogger for MultipleSclerosis.net, you can view her blogs here. Her writing is mostly written with a sense of humor and personal experiences. 

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Me, Myself, and MS

By Marc Stecker

Beginning at the moment of diagnosis, people with multiple sclerosis face a rogue’s gallery of disorienting circumstances. The long process of socialization that starts when we are children never prepares us for life with a chronic, potentially disabling illness. Newly minted MSers often find themselves thrust into an alien landscape without the benefit of any maps or navigational aids, left to find their way through a haze of fear and confusion. The social compact which we are taught almost from birth – work hard, play well with others, and your rewards will be reaped – is smashed to smithereens by these four simple words: “You have multiple sclerosis.”

Among the countless aspects of life impacted by the MS are our relationships; both the external we have with others and the internal we have with ourselves. Several studies have shown that the divorce rate among couples with MS is significantly higher than those of the general population. Adding the responsibilities of “caregiver” to a spouse or lover can be too much for some to bear. Many friendships are held together largely by shared experiences. If a person with MS is no longer able to engage in their previous level of social activity, those attachments can fray and sometimes break entirely. Old relationships are often replaced by new – some of my closest friends are now other people with MS, who understand the complexities of this odd life without need of explanation.

Perhaps the most important and least acknowledged relationship affected by MS, though, is internal, the one a patient has with themselves. Facing the realities of life with a chronic and potentially debilitating illness forces one to reshuffle priorities, reorient and sometimes abandon long-held hopes and dreams, and ultimately grapple with who they are at the very core of their being.

Nothing defines the notion of mortality more sharply than being diagnosed with a serious illness. Gone are the illusions of invincibility that we cling to as we strive to climb the social pyramid. Patients with more benign disease may be able to keep up appearances, but deep inside aspects of life that had long been taken for granted are revealed to be not birthrights but precious gifts, subject to being yanked away by the whims of an inscrutable universe.

For the first few years after my diagnosis, when I was still able to work and socialize much as I had before the onset of my illness, at times I felt as if I was a covert agent, possessed of a vital secret kept hidden from the world at large. As my disease progressed and hiding in plain sight was no longer possible, an inevitable reckoning began to take place. I was left to confront aspects of my emotional history that had long been stowed away in the dusty recesses of my psyche.

When my accumulating disabilities forced me to retire, effectively bisecting the narrative flow of my life into “before disabled” and “after disabled”, I found it almost impossible to not look back and contemplate the roads not taken, the opportunities missed. Might a different choice made here or there have allowed me to avoid the trap of multiple sclerosis, or to have lived a richer life before the onset of disease? A question without answers, of course, but also a line of inquiry that begs for the illumination of self-awareness. As the Persian poet Rumi wrote, “the wound is where the light enters.”

MS led to my pondering the me who lurked within, stripped of the material trappings of my healthy life, which more and more became useless as my disabilities mounted. I soon saw that those adornments often served as a sort of camouflage, shiny trinkets employed to distract the overly curious, myself included. Who was I with soul stripped bare by the harsh realities of chronic illness, naked in this strange new world?

I discovered facets of my personality that had been long neglected and rekindled interests and passions that I’d almost forgotten existed. I recognized and then worked on abandoning self-defeating habits I wish I’d been cognizant of when I was well, behaviors that served no purpose other than to hold me back, then and now. I came to understand the power of forgiveness, extended not only to others but also to myself, and that absolving myself of past mistakes was far more challenging than pardoning the misdeeds of others. Indeed, kindness to self can be the hardest form of kindness to practice.

Oddly, I am more at ease with who I am now than I ever was back in my healthy days. And though I’m loath to grant any positives to my experience with this disease, it would be foolish of me to deny the self-knowledge and maybe even the touch of wisdom that multiple sclerosis has granted me. Although creeping paralysis is becoming an ever-greater presence in my life with each passing day, I am and will always be more than my disease. I’m not a unicorns-and-rainbows kind of guy, and I chafe at platitudes about the universe only giving us as much burden as we can bear. But I will say this: getting sick and eventually quite disabled has weakened my body, yes, but it has also strengthened the spirit within

*Marc Stecker lives with his wife in New York City. He was diagnosed with Primary Progressive multiple sclerosis in 2003, and started writing his MS themed blog, Wheelchair Kamikaze, in 2009. As the name of his blog implies, Marc enjoys scaring the bejeezus out of pedestrians on New York City streets by zooming past them in his power wheelchair. To date, there have been no fatalities.

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Stepping Outside My Comfort Zone – A Daughter’s Story

By Rachael Scharett

A father is a very important role in a young girl’s life. I remember growing up thinking that no one was as strong or capable as my dad, Dan Scharett. He worked hard to support our family. He built the house I grew up in and he even came home from work and chopped wood for the wood stove we used for heating. I knew there was nothing my dad couldn’t do. Then, when I was still quite small, the most shocking thing happened; my dad broke his leg while playing softball at a family function. He had been running to a base and when he turned, his one leg didn’t, and it snapped. While everyone else simply thought nothing of it, I cried nonstop. He was a superhero and to see him get injured was something I couldn’t comprehend. What we later learned was that he had been experiencing numbness in his feet and legs which ultimately caused his fall; numbness caused by multiple sclerosis.

As a family, we’ve spent 25 years watching his gradual decline. The man who could do it all slowly lost his ability to chop wood for the wood stove, he couldn’t climb the stairs in the house he built, and now he can’t even stand. Despite this, he still laughs every day. He jokes around with our family, friends and neighbors. He still pushes himself to do things around the house and yard that even the healthiest individuals would hire someone to do. It was his motivation and drive that inspired me to run the Dopey Challenge at the 2018 Walt Disney World Marathon. Seeing him fight to live a fulfilled life despite his MS motivates me to do things I would normally consider too hard. I wanted to run with Team MSAA during this event to help raise money in my dad’s honor, so when I saw the Dopey Challenge, which consists of a 5K, 10K, Half Marathon and Full Marathon, totaling 48.6 miles, I knew I had to choose that event. I am by no means an athletic individual, but if he can push himself every day, then the greatest thing I could do to show my appreciation for all he has done for our family, is to run the furthest and push myself outside of my comfort zone.

I truly hope that one day a cure will be found for MS but until then, organizations like the MSAA are a great resource for families like my own. I am proud to be able to fundraise and contribute to such a wonderful organization…. My dad will be there when I cross the finish line, supporting me, just like he has always done; after all, he is still my superhero.

*Rachael is participating in the Dopey Challenge as a member of Team MSAA during the Walt Disney World® Marathon Weekend presented by Cigna®.  To learn more about Rachael’s run or support Team MSAA, please check out her personal page.

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Creating Relationships with MS

By Laura Kolaczkowski 

When we talk about relationships it’s easy to immediately think of partners, children, and other family members and how our time with them is impacted by our multiple sclerosis.  The twitter hashtag #WeHaveMS rings true because having MS affects everyone in our close family circle.

Then there are other relationships that develop because of our disease – that would include the ongoing contact we have with our care team. Our neurologists, nurses, medical assistances, billing clerks, and everyone else in the MS clinic are people we become familiar with and dependent upon in more than a passing basis, and we develop a long-term relationship with them as well.

As important as our family and our providers are in establishing and maintaining healthy relationships, there is one group that holds more importance than these others – that would be the people who make up the MS community.  People living with MS understand what it’s like to live with this disease, the struggle to make peace with this disease, and how to celebrate and live a full life in spite of this disease.

The relationships I have within the MS community are some of the strongest and most important in helping me to live in a positive way, despite having MS.  I’m fortunate to have made friends, thanks to my MS, who are usually available at any time to stop what they are doing to take my phone call or answer an email.

Many of these friends I have never met in person, but we have that common bond of living with MS that cement our relationships.  More than once my family has looked at me as if I’ve forgotten all the warnings of “stranger danger” and the internet safety while I’ve forged new friendships and comfortable relationships with total strangers.

Being alone with a chronic disease, and particularly with MS, can be bad for us psychologically and often even our physical health can suffer. Creating relationships with others who also happen to live with MS gives us strength in many ways that can’t be measured but is felt deeply. If you don’t already have a special relationship with another person who has MS, I strongly encourage you to join a local support group, an online forum, or even one of the many Facebook groups that focus on multiple sclerosis. Lasting relationships might not develop quickly because those have to be tested over time, but stick with it and I have no doubt you will connect with people of kindred spirit.

*Laura Kolaczkowski was diagnosed with MS in 2008.  She is the co-principal investigator for iConquerMS and the lead patient representative. Her interests have taken her into the world of patient centered research, which is meant to deliver answers that are meaningful to the MS community. She is medically retired from the University of Dayton thanks to her MS, and lives with her husband in Ohio.  She invites you all to join iConquerMS and help solve the mystery of MS.

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Tri-Color Pasta Salad

As summer is coming to an end, I thought I would share a family recipe for Tri-Color Pasta Salad.  You can eat this dish as a meal or a side dish.  It only takes about 15 minutes to prepare and is always a hit. You can add extra vegetables, cheese, or even pepperoni to make it your own.

This could be the perfect pasta salad for your Labor Day!

Ingredients

  • 12 oz box tricolor pasta
  • ½ cup black olives, sliced
  • ¼ cup red onion, chopped
  • ½ cup red pepper, diced
  • ¾ cup cherry tomatoes, sliced
  • ¾ cup cucumber, diced
  • 1 cup reduced-fat Italian dressing
  • ½ tsp salt
  • ½ tsp pepper

Instructions

  1. Bring a large pot of water to a boil and cook pasta according to package.
  2. Drain pasta and let cool.
  3. In a large bowl mix pasta, red pepper, red onion, cucumber, cherry tomatoes and black olives.
  4. Add 1 cup of Italian dressing to pasta and gently mix all ingredients together.
  5. Chill pasta before serving.

Enjoy!

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Keep it Romantic

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years.  MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working.  I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline.  It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

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The Not So Good Relationship

Keeping with the theme of relationships on this month’s blog inspired me to do a little Googling into different relationship topics and recent news to see what’s been trending lately. I actually found several pieces on toxic relationships and help in how to recognize these. Usually when people think about relationships the mind doesn’t tend to go towards the dark side necessarily, but the truth is there can be a lot of toxic parts to a relationship that some people don’t even notice sometimes. Often, people believe their relationships look like other’s relationships; everyone has their ups and downs and not-so-fluffy cloudlike days and this is normal. This is true, but when the relationship is in that darker side of the clouds more often than not, it’s something to address.

Psychology Today recently posted about how to recognize toxic people and relationships, and it’s not always easy. In a relationship, sometimes the people involved have blinders on in order to see what they want or need to see in the other person; it’s only natural. Everyone has flaws and no one is perfect, but there are some toxic traits that can’t and shouldn’t be overlooked. Things like selfishness, disrespect, and arrogance are all signs that point towards a potentially harmful toxic relationship. The post also mentions these other red flags as potential signs of a toxic bond:

  • Lying
  • Being unapologetic
  • Manipulative
  • Abusive
  • Narcissistic
  • Spiteful

Examining one’s relationship and trying to recognize red flags is not easy. It can be overwhelming and sometimes shocking to realize that the relationship is causing more harm than good and if it’s contributing to stress and negativity. Sometimes these bonds are ones that can’t be severed so easily either, especially if they’re with family and loved ones. This is why it’s so important to surround yourself with positive energy and loving relationships whenever possible, and taking a step back from the ones that aren’t is sometimes necessary. Reaching out to others for support, seeking therapy, taking time for self-care and self-love are actions that can help combat toxicity. Everyone deserves to be respected and to be in relationships that nurture love and support; anything else is unnecessary distress.

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My MSAA Community – One Year Later

It has officially been one year since MSAA launched its online peer-to-peer forum, My MSAA Community!  This virtual community (powered by HealthUnlocked) has allowed individuals living with MS and their care partners and families the opportunity to share their experiences, discuss a variety of topics, and support others in a friendly and safe environment.  Community members are able to connect with other people affected by MS, contribute to ongoing conversations, or start their own conversation asking for advice or sharing their journey.

Here are just a few of the ongoing conversations being discussed on My MSAA Community:

Commemorate this milestone with us by contributing to these conversations or start your own by joining My MSAA Community!

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Someone Has to be Excited…

In talking about relationships this month on the blog it’s impossible not to think of the bonds I have with the people in my life and how impactful they are in shaping who I am, and in turn, what I am to others.  Sometimes we don’t realize how much we’re touched and influenced by other people. But all it can take is just one conversation, one tiny fraction of an entire day to make an impression on someone else. I had an occasion recently that I wasn’t really feeling up to celebrating much. My husband on the other hand, was very happy and wanted to share his elation; he has a special knack for being positive and optimistic. His exact words were “someone has to be excited for you.”  The sentiment didn’t resonate in that precise moment but afterwards it was all I could think about. That this man knew that I wasn’t able to feel joy in that particular moment but still wanted to mark the occasion and celebrate for me. That is a remarkable relationship trait.

There are going to be times when a day is gloomy, a mood is sour, or chaos arises. It’s a roll of the dice sometimes in how a day will play out — but what matters is who is there with you at the end of that day, being your cheerleader and light in the darkness. It’s difficult trying to be happy and positive 24/7, we’re only human; it’s part of our wiring to experience other moods and emotions. But if you have or can find that other person who can champion for you when you can’t for yourself, find gratitude in that because it’s a truly special trait. Being your own champion is of course ideal, but in those moments where this isn’t possible, having that piece in your relationship with someone else is truly significant.

Unfortunately many people experience toxic relationships that are one-sided and selfish where the other person wouldn’t think to imitate this selfless behavior. That is why self-love and self-respect are necessary in your pursuit of finding relationships that will help foster encouraging aspects and positively influence you. You deserve to be loved and supported and knowing this makes all the difference in what you want or are looking for in others. Being that hopeful light for someone else and having them be the same for you when needed signifies a healthy bond; and a relationship where one person can be excited for the other if and when they can’t be for themselves.

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