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 WebMD 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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Tom Burzinski – October 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Tom Burzinski of Rochester, MN:

Tom Burzinski artwork entitled "Me, Myself, and I" as part of MSAA's Art Showcase
“Me, Myself, and I”

About the Artist – Tom Burzinski

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