The Underground World of MS: Part 2

By Alene Brennan

How to Navigate the Underground World of MS

Being the invisible disease that it is, multiple sclerosis can make you feel like you’re living in an underground world. So let me lay out a roadmap to help you navigate to better understanding and better health.

Educate Yourself
Understand the disease. While multiple sclerosis is an incredibly mysterious disease – the cause and how it will manifest in each person are unknown – there are some fundamental facts that are helpful to understand.

With knowledge comes power. When you have a greater understanding of the disease process, you have the power to play an active role in your disease management plan. The reality is time is so limited during appointments with the neurologist, not to mention the fact that there’s only so much your mind can comprehend in a single conversation if you’re dealing with MS brain fog. You need another source of information to understand what’s going on in your body.

Most importantly, understand that just because you may not have a lot of symptoms at the moment – even invisible ones – does not mean that you can ignore it. It’s tempting, trust me I know! It’s so tempting to pretend like you don’t have it so you can toss the medication to the side and eat the addictively delicious standard American diet. But when you educate yourself on the research and read the regretful testimonials of others, you’ll see statistics like within 10 years of diagnosis, most individuals will need assistance walking. For me, that was tremendous motivation to act now for my future’s health. Personally, I felt like I was playing with fire and incredibly naïve to think that because I didn’t have a severe case of it, I could treat it lightly. The body will heal, but it needs time. That was something that I felt in some ways I did have on my side. I certainly wish I could have turned back the clock to prevent this disease completely, but I wasn’t going to make the mistake of dismissing it now when I could give my body the luxury of healing through medicine and on the root level with diet and lifestyle.

Get to Know YOUR MS
Multiple sclerosis is an individual disease. No two people living with MS will have the exact same experience. In fact, the symptoms will vary across time for one person. And are you ready for the kicker? Individuals living with MS don’t necessarily know that a symptom that they’re having is related to their MS. Fatigue. Bladder or bowel issues. Brain fog. Visual disturbances.

Are the hands tingling because of MS or because I’ve been typing on the computer all day?

The list goes on.

Only you know your body best.

Personally, this is where I believe a little intuition comes into play. I tend to have a gut feeling as to what caused a particular symptom. I don’t try to play doctor based it, but it helps me gauge when I should check in with the doctor and when I should watch and wait.

If I do have a symptom that has resurfaced or a new one that appeared, I also try to understand what may have triggered it. I’m not looking to place blame on myself rather it’s more information that I have in understanding my potential triggers.

For example, did I push too hard through a stressful time without taking the proper rest? Was I in an environment that was too hot – a car with the heater too high, a toasty fireplace, or a jacuzzi? Did I unknowingly eat an inflammatory food – gluten, dairy, sugar?

All of this helps you to understand what MS looks and feels like for you, and therefore how to best manage it.

Drop that knowledge
I’ll admit I’d share my diagnosis with my extended family and friends for more than a year, I feared people treating me differently and putting limitations on my potential in life. As an incredibly independent woman, that’s terrifying. So I did a great job of hiding the symptoms. The downside? Family and friends – those that are closest to you – only see/know half the picture and treat you based on that skewed vision.

Once you have a better understanding multiple sclerosis as a whole as well as what it means for you, you’ll be far better positioned to share your diagnosis and experience with others. I invite you to consider sharing your diagnosis with trusted friends and family. They can be incredible support for you. Masking your symptoms can be counterproductive. Again, everyone will assume you’re okay when you’re not. And more so, welcoming in others helps to break down the isolation and stigma of the invisible disease.

I saw this as an opportunity to bring greater meaning and purpose to my diagnosis. I want to bring awareness and education around this unseen disease and support those going through it.

Join a Community
As the health benefits from around the world are studied, a unique discovery came to surface. Those societies that had a strong sense of community and belonging had higher health rates. Being part of a community is beneficial to your physical, mental and emotional health. Being diagnosed with a currently incurable disease like MS can have you craving connection and community with someone who straight up gets it.

There are great in-person support groups as well as many online communities. Personally, I’d love to invite you to my online community, MSIndependents. Join me on Facebook or Instagram. It’s far from a boo-hoo fest. Nope, this is a brigade of incredible individuals diagnosed with MS who support one another in living unapologetically authentic in the disease and independent beyond expectations.

*Alene Brennan works with individuals living with MS and other autoimmune diseases to create a diet and lifestyle that will support their healing and disease management. She holds four certifications: nutrition coach, yoga instructor, personal trainer, and natural food chef. You can learn more about her work and follow her blog, recipes, and more at www.alenebrennan.com. Check her out on Instagram and Facebook, too!

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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