How to Get Your Doctor to Listen

Doctor visits are never easy. Appointments can feel rushed, leaving you feeling unheard and unsupported.

To find out what works best when folks with multiple sclerosis (MS) see a doctor, we reached out to the Facebook community. We asked, “How do you get your doctor to actually listen?”

More than 150 community members shared some great tips for those who may be feeling frustrated at their doctor appointments.

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Engaging With Kids or Grandkids on Rough MS Days

When you are having multiple sclerosis (MS) flare-ups or are otherwise not feeling like yourself, it can be hard to find the energy to play with your kids or grandkids. But if you have committed to watching the kids, sometimes you must make the best of it.

To find out how people in the community handle those days, we reached out to the Facebook page. We asked, “What are some ways to play or engage with your grandkids when you are having a rough MS day?”

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MS Symptoms People Rarely Talk About

Some aspects of multiple sclerosis (MS), such as muscle spasms and fatigue, are talked about often. However other symptoms are not commonly discussed.

To find out more about the people who experience those symptoms, we reached out to the Facebook community. We asked, “What are the MS symptoms that no one ever talks about?”

The community was inspired by this topic – nearly 200 community members responded! Here are some of the lesser-known symptoms they shared.

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What People with MS Wish Others Knew

When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).

Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.

To find out more about the MS community’s experiences, we reached out to the Facebook page. We asked, “What is one thing about MS that you wish people understood?”

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What Is Your Ideal Climate?

No 2 people are affected by multiple sclerosis (MS) in exactly the same way, especially when it comes to the environment. Different climates can trigger symptoms in different people.

To find out more about the environments preferred by the community, we reached out on the Facebook page. We asked, “What is your ideal climate?”

More than 300 people responded! Here is what they shared about the climates that treat their bodies the best.

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Hopes and Goals for the New Year

With each new year, many people set goals and intentions for the best possible future.

Thinking about the new year means a lot of different things to people in the multiple sclerosis (MS) community.

To learn more about this, we reached out on the Facebook page. We asked, “What is your biggest hope for your multiple sclerosis journey in 2023?”

The question received more than 300 comments. Here are the themes that emerged.

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What I Wish People Understood About MS Fatigue

Unless they live with it, most people do not understand what multiple sclerosis (MS) is and how it can affect the lives of those who do live with it. And, often, they do not know what it is like to experience the fatigue that is a big part of MS.

To learn more about how fatigue affects people with MS, we started a conversation on the Facebook page. We asked, “What is the one thing you wish people understood about MS fatigue?”

The topic saw a huge response – more than 1,300 people commented. Here is some of what they shared.

Getting more sleep does not “fix” fatigue

The number one issue that members of the MS community mentioned was that MS fatigue does not go away with more sleep. Many people with MS are sick of hearing that they should push through their tiredness or that a nap will cure it. 

This type of full-body exhaustion is hard for others to understand. No matter how many times it is explained, they may never get it. The good news is that this community is full of people who know exactly what you are dealing with.

“MS is not just being tired. Getting enough sleep does not help.”

“It is not sleepiness. It is bone-dead tiredness. It is where you are so tired you shake. It is almost impossible to get moving. I absolutely abhor people who ask, ‘Why do you not get more sleep?’”

“Every cell in my body is more tired than you have ever been in your entire life.”

The exhaustion is also mental

MS fatigue affects more than just the body. It can leave your brain tired, too. In a way, this can be even more frustrating than physical exhaustion. Feeling too tired to think clearly means people with MS must practice ongoing patience and acceptance.

“It is overwhelming, and it is not just your body that is tired. It is also your brain.”

“It is physical and mental exhaustion that cannot be relieved with sleep or a nap.”

It is so unpredictable

Another huge challenge is that fatigue often shows up with no warning. This makes it especially hard to make plans for work or for fun. Not knowing how they will feel moment to moment can be annoying and frustrating for many people living with MS. The unpredictability may mean rescheduling often. It also leads to discovering who in your life is able to compromise and accept that you will often need to change plans.

“We have no control over it. One minute we are doing great, and then the next minute, total exhaustion sets in.”

“It can come on suddenly and wipe me out so quickly that even lifting my arms to eat seems like a lot of work.”

All that tiredness and missing out is depressing

When someone feels tired often, it can be hard to say yes to social plans and other self-care activities. They may break plans or never make them in the first place. All of that saying “no” can make them feel lonely and sad to be missing out.

Learning to live with MS means finding a balance. Maybe saying “yes” to a party across town is too much, but inviting the party host over for coffee the next day feels manageable. It is worth it to try and find a way to keep social events and fun activities in your life.

“That it can cause an unrelenting depression and sense of missing out.”

“That it is devastating enough to impact your life in the most important ways.”

“How miserable it is and how it influences every decision you make.”

MS symptoms do not result from a choice, laziness, or old age

For some reason, people often dismiss MS symptoms. When someone with MS talks about fatigue, some people may be quick to think they are lazy. Others may wrongly assume that they have a choice about how they feel. Still others may think their MS symptoms are merely part of “old age.”

Unsolicited advice, comments, and criticisms can be hurtful. Many members of the MS community would find it helpful if more people understood that MS is a real disease with real consequences.

“It is not my fault.”

“I am NOT lazy! I am exhausted.”

“When I say I am tired or hurting, they would understand, instead of saying that I ‘get that way.’ They also will tell me that it is just old age.”

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Ideas for Indoor Activities With MS

When you live with multiple sclerosis (MS), it is easy to feel overwhelmed by extreme weather, be it hot or cold. Cold weather, especially, can make it hard to move your limbs and can cause muscle spasms. On days when the weather is too much, you may head inside to feel better.

To find out how those living with MS stay mentally and physically active on the days that weather pushes them inside, we reached out on Facebook. We asked, “If you want to do an activity but cannot be outside due to extreme weather, what is your go-to indoor activity?”

Sixty community members shared their go-to activities! Here is what they had to say:

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When the MRI Stays the Same but Symptoms Get Worse

One of the hardest parts of living with multiple sclerosis (MS) is feeling like doctors do not fully understand or appreciate the extent of your symptoms. This is especially true if they consider only your MRI results. Sadly, this experience is common. Many people living with MS have worsening symptoms even when their MRI results stay the same.

To find out more, we reached out on the Facebook page. We asked community members, “Have you ever had an MRI checkup that showed no noticeable changes, however you felt as if your MS was worsening?”

Nearly 400 community members responded! Here is what they shared.

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Signs of an MS Flare

Living with multiple sclerosis (MS) means dealing with flares. Flares occur when symptoms worsen for at least 24 hours. To be considered a flare, it also must occur 30 days or more after the last attack.

We wondered what cues your body gives you about flares. We asked our community on Facebook, “How can you tell that you are experiencing an MS flare?” We got more than 250 responses, so it is clear that there are many ways flares affect you.

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