Blame the Disease, Not the Person

By Stacie Prada

Question: What was most and least helpful when you were first diagnosed?

Answer: The people. Collectively, they were the most helpful. Individually, some were the most and some were the least helpful.

Blame the disease, not the person

The people who listened, asked questions and validated my feelings helped me the most with my multiple sclerosis diagnosis. Answering sincere questions helped me analyze what was true at that time and what was fear for the future. Thinking through the issues and explaining my experience helped separate what I could influence from what I couldn’t. They offered suggestions while respecting my opinions and decisions. The paid support people who helped me immensely included my medical support team: primary care provider, counselor, neurologist, and physical therapist. The unpaid support team included family, friends, coworkers, online connections, and the local MS self-help group.

Those who told me what I needed to do or why I shouldn’t worry were naïve and ill-informed. They would prescribe treatments without knowing what caused my symptoms or what my symptoms even were. They’d tell me I’d be fine since someone they know who has MS is fine. They assured me I’d stay healthy to appease their own fears, not mine. They included people in all of the categories listed above who helped me immensely. A person’s profession or relation doesn’t automatically place them in the category of helping or hindering. How they behave and interact does.

The people who judged me harshly for how my health was impacting them caused the most stress, guilt and pain. I was criticized for being less attentive in my relationships and for letting MS be my focus. I believed it was a personal fault that I was burdening others. 

I genuinely thought I should be able to deal with my health privately and keep doing everything I’d been doing for others. I wanted to be strong and prevent the people in my life from being affected by my diagnosis and documented chronic illness. 

MS symptoms and exacerbations made me unable to meet the expectations I had for myself and others had for me. It helped me realize the expectations had always been unreasonable. I learned I’d never be able to be healthy physically and emotionally if I kept trying to meet unreasonable expectations.

I realized I can’t do this alone, and I shouldn’t. 

The people who validated that I needed to address my health and accepted things would change – they helped me the most.

The people who were angry, hurt, blamed and resented me for their unhappiness – they helped force me to realize I didn’t need to keep working toward the life I’d been building, and I probably couldn’t if I kept trying. In a painful way, they helped me open my future to more possibilities. Changing things wasn’t failure, it was survival.

Survival requires self-care. To people who are used to benefiting from an unhealthy relationship dynamic, other people practicing self-care feels like neglect. It’s good that terms are available now to describe manipulative behaviors. Consider (and look them up if unfamiliar) gaslighting, shaming, isolating, catastrophizing, guilt-tripping, silent treatment, insults disguised as jokes, and jealousy are just some of them. Hopefully discussions and education on unhealthy relationship tactics help people recognize them instead of feeling responsible for other people’s feelings and accusations.

It helped the most when I and the people in my life accepted my health as a fact of my life and worked together to make the most of my abilities and limitations. They watch out for me, help me reflect, know my health may inconvenience them at times and always make it clear they are on my team. 

We are united in our approach: Blame the disease, not the person. 

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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A Letter from a Friend

Dear friend,

I am sorry to learn of your recent MS diagnosis. My heart cannot truly grasp the emotions you must be experiencing. I imagine this new chapter of your life has been quite scary and frustrating for you. Please know that you have a community of advocates behind you cheering you on.

I have seen firsthand how an MS diagnosis can take you on a wild emotional roller coaster ride that you never asked to be on. My mother was diagnosed with MS back in 1996. Advances in research and educational information about MS were much different back then. She wasn’t told that every person’s MS journey is unique and can look totally different than someone else’s. As a family we had no idea that MS didn’t look the same for everyone who was diagnosed with it.

As you deal with being newly diagnosed, I’d like to share with you a few words of encouragement that I wish someone had given my mom.

Your story as an MS fighter is completely unique to you. Try to stay away from searching online and get your information from reliable sources such as your doctor’s office and MS organizations like this one I’m writing to you from. Also, staying positive is extremely important as you navigate through this uncharted territory. Remember, toxic emotions release neurotoxins into the body. Additionally, being mindful of the type of food you put in your body goes a long way. And Lastly, never be afraid to ask for help, and never be ashamed to advocate for yourself.

Friend, I want you to know that I think of you often and wish you all the best as you learn to live life as someone who has been newly diagnosed with MS. MSAA is rooting for you, cheering you on, and doing everything we can to make a positive impact in your life and on the entire MS community.

We are here for you, and we care about you.

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Introducing a Roadmap for the Newly Diagnosed

Receiving news of an MS diagnosis can be intimidating. Overwhelming feelings and questioning where and how to begin your journey is normal. To address this need, MSAA is proud to present Roadmap for the Newly Diagnosed, a series of educational fact sheets to direct new members of the MS community to the most sought information after an MS diagnosis.

Each fact sheet is designed to help support you as you start out on your MS journey, and includes topics such as:

  • Understanding your diagnosis
  • Accepting your diagnosis
  • Making an informed decision on sharing this diagnosis with others
  • Building a healthcare team
  • Various terms and phrases used frequently in the MS community
  • Additional resources for the newly diagnosed

Feeling unsure of which fact sheet to begin with? Alongside the fact sheets is a short, informational questionnaire that can help guide you to the fact sheets you may want to review first!

Roadmap for the Newly Diagnosed Fact Sheets

While an MS diagnosis can be disconcerting and anxiety-provoking, there are resources available to support you. View the Roadmap for the Newly Diagnosed fact sheets now on MSAA’s website.

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A New Diagnosis

Being diagnosed with MS can be a scary and unsure time. Lots of questions come up in the process and produce many thoughts centered around ‘what if, how, and when’ concerns. It can be overwhelming to learn about the disease too as there is so much information available on it. But there’s no right or wrong way to start educating yourself and others about the condition. And it’s important to know that it’s not something that can or has to be learned overnight. I always tell clients to have patience with themselves and to learn things as they’re comfortable doing so. Everyone is different and approaches things in their own way and time and that is ok. Below are some commonly asked questions that arise during this period for many diagnosed and their loved ones.

Can I still work?

This question comes up often as individuals consider what their future may look like with MS. It will depend upon one’s symptoms and course of their disease, but many people do continue working in some capacity with their diagnosis. Job accommodations can be asked for to help modify work schedules, tasks, and routines. Vocational Rehabilitation offices located in counties throughout the country work with individuals who need assistance in finding/maintaining employment that meets their needs when managing disease symptoms and issues. Having a conversation with the doctor can help with this too. Evaluating any changes that could be beneficial in the workplace or considering whether to and if it’s the appropriate time to retire or apply for some type of disability benefits can be discussed. It’s a very personal and tailored decision that comes with a lot of thought and input. Finding what’s right for you can take some time and deliberation so again have patience with this process too. More information about Employment and MS can be found on MSAA’s website here, https://mymsaa.org/publications/employment-and-ms/.

How do I disclose my diagnosis to others and help them understand the disease?

Again this is something that has no right or wrong answer or way of going about it. When and if you decide to disclose your MS diagnosis to others is a personal and unique decision and can be done in different ways. Letting others know right away or waiting to tell them is something each person decides based on differing factors. Like their relationships with their family and friends—whomever is in their support network, their employer and colleagues, etc. Some people will seek out and find comfort and support by telling others. While some who may not receive the same level of care from those they know may decide to wait or not disclose. For those who show interest and want to learn more about MS there are many outlets in which they can do so. Using reputable MS sources of information online, watching educational videos, listening to podcasts and webinars are just some ways. There are many avenues to educate about the disease. For the latter individuals who may not have that inner-circle support, there are several ways to find these support resources elsewhere.

Is there support available?

Yes! And in more ways than one. This is a question some folks ask hesitantly because they’re not sure if this is something they want to pursue right out of the gate. This is completely understandable. Every person’s experience with MS is different so sometimes it can be intimidating and uneasy to interact with others who may have a different course with their MS—different symptoms and varying degrees of disease progression. But this too can be something that’s uniquely approached. People can choose to connect with others as they find it necessary and feel comfortable in doing so. And if they make the decision to, there are many avenues to try. There are MS organizations, support groups, and online communities, including MSAA’s peer support forum My MSAA Community, that individuals can turn to for information and support.

One of the most crucial things to know is that you do not have to go through the diagnosis alone.  Whether just diagnosed or years into its course, you don’t have to do it by yourself.

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Identity, Humor, Intelligence, & Chronic Illness

By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people. 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself. 

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

Identity

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being. 

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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What to Expect When You’re Not Expecting…

By Scott Cremeans

As a seventeen-year veteran MSer, I am sometimes asked to advise the newly diagnosed. Sometimes I am the one to welcome the recently initiated into the fraternity or sorority of MSers. Questions get posed to me all of the time typically asking the same queries in different forms. Is MS a death sentence?  No. You have MS, how do you look so good?  Oil of Olay. What now? Live your life.

Then one gentleman’s query put me in a quandary. Continue reading

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Read All About It: MSAA’s Newest Publications

Recently, the Multiple Sclerosis Association of America proudly published two new publications: the Winter/Spring 2018 Edition of The Motivator, and the 2018 MS Research Update.

This newest edition of The Motivator features the cover story, “Finding Direction When Newly Diagnosed,” which covers a range of topics including MS basics, treatment options, employment issues, government programs, and more.

The 2018 MS Research Update provides a comprehensive overview of study results on many of the approved and experimental disease-modifying therapies for MS, as well as highlights on new directions in MS research.

Read excerpts from these two publications here:

Continue reading

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I’m Not Ready

This month we’re talking about wellness and this sort of fits in to wellness but it also just fits into life. I recently spoke with a young man and being the empath I sometimes am, what he said resonated with me on a person-to-person level. It’s not MS specific or specific for a gender, age, or race. This, I think, can be anyone and when I spoke with him it definitely was me. This young man not yet 25 years old had just found out he has MS and was not even out of the hospital parking lot contacted our helpline to…well honestly to vent. But not in an I just need to yell or scream or I need someone to blame way. His first words after Hello and the usual exchange of courteous pleasantries was “I’m not ready.”

Confused, I sat quietly trying to decide what, if anything, I should say in response and before I had crafted my next sentence he continued “I’m lost and I don’t know if you can help me but I am just not ready. I’m not prepared for this or know what to say or do. I am not open enough or smart enough for this. I’m not sick enough or old enough. I’m just not strong enough for this. I’m not ready.” We spoke for a while about the world he’d just entered, what he wanted to do next and what MSAA did. But mostly he spoke, listed and got lost in thought and I listened as he exhaled a breath he’d probably been holding for some time. Before finishing he asked me, “Do you have any idea what I mean?”

And I did; I do. I can’t relate to the diagnosis but I’ve been there, the I’m not ______ enough place. I’m not friendly enough, prepared enough, knowledgeable enough or good enough. I’m not helping enough, understanding enough, empathizing enough or listening enough. I’m not enough for them or won’t be enough to do this. I know I’m not alone in this (I don’t think I am at least), we all can get there from time to time. We aren’t ready, aren’t available, not right enough, rich enough or poor enough. We’re not well enough or sick enough or we feel we aren’t loved enough or able to love enough. We aren’t able to explain how we feel or why we feel the way we do. We’re not enough for them to stay or we aren’t ready to leave. I’m not sure, I’m not *you fill in the blank*.

It’s hard being able to admit the things we feel we aren’t. What we lack or perceive we lack. It makes us vulnerable and exposed, sometimes sad, but it’s also honest. Part of wellness, I believe, is acknowledging these “I’m not _____ enough” statements and facing the feelings they bring out in us. It’s taking the time to recognize the part they play in our lives and seek the assistance or understanding we need to address them. The “I’m not” statement doesn’t have to have the final say; it doesn’t have to be the whole story. I’m not sure if anyone will be able to relate…but just maybe they can.

not-good-enough

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My MS Journey – Jessica’s Story

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS.  Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?”  However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis.  There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information.  All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

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What is Your Perspective?

On our helpline here at MSAA we speak with clients every day from across the country who contact us for any number of things. Resources for assistance, information on our programs, clarification on something they saw or read on our site or in our publications and at times they’re looking for someone to speak to who they can bounce ideas off of or just have a listening ear. Recently I spoke with a client who was more newly diagnosed and called to get some broad spectrum information. What struck me at the end of our call was that the client taught me probably more than I did them.

During our conversation we happened upon the idea of changes in perspective. They recounted to me how their world had very much changed when they were diagnosed with MS, in the not too distant past, and how at first they were not sure at all what to do. There were lots of questions, some of which were unfortunately met with little, or vague answers. New terminology to learn. Medicine to juggle. Periods of anger, frustration, and sadness. New planning to do they hadn’t thought of before. I listened as they recounted one such day that found them sitting on the bedroom floor in the dark not sure of what to do next. Unaware of the time that was passing, just sitting. “This,” they told me, “was my finding perspective. I sat on the floor recounting stories to myself of events in my life, and in the middle of my thoughts I found a new way to see things.” After a good deal of time angry and upset on their bedroom floor they sat and recounted all the events that made them proud, excited, and happy. The client didn’t want those events to be the only memories with a happy connotation that they would ever have. All in the past.

The client said they pulled out some scrap paper and made lists of the things they were angry and frustrated over.  Things that they felt they had lost or missed. Along with that, they scribed a list of the things they enjoyed, they wanted to do, they were good at or had interest in. This list, they said, was there perspective. This list was longer and when they read it over they found in it thoughts of how to still visit all the European countries on their bucket list, while dealing with the uncomfortable temperatures. How to volunteer and be part of their community while working in different time increments or events. There they thought of how best to use their love of blogs, working with people and photography to connect with others and raise awareness.

They said they had two ways to go about this and the one they were deciding on was to choose their attitude not to let their attitude be chosen for them. They looked at the list of things they were angry over and decided to choose their attitude toward it. Would it always be easy to change the way they thought about being diagnosed?  No. But if they chose to change their perspective, not from the things they had lost, but toward the things they had and could do, and use and focus on those…it gave them a different perspective. “That,” they told me, “got me off the floor onto my bed.” Then a little while longer to their dining room table where they started to brainstorm, make some new plans and objectives keeping their MS in mind, but not letting their MS choose the plans. Perspective is just what you make it and sometimes that’s easier said than done. But we all have a choice to make in changing the way we look at things. What is your perspective?perspective

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