How to Help Someone Newly Diagnosed with MS or Experiencing a Relapse

When Your Loved One Is Diagnosed with MS or Experiences a Relapse

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When a friend or loved one has just been diagnosed with multiple sclerosis (MS) or is experiencing a relapse or flare-up, you want to know how to give the most reassurance and comfort. At a moment like this, knowing what to say and do can be especially difficult for you both.

For the Newly Diagnosed

It can be tempting to try to reassure your newly diagnosed loved one that they "don't look sick" or that you know of someone who cured their MS.

For those who've done their research, it can be hard not to do a "brain dump" of what they think is helpful information about the disease.

Not only is unleashing a ton of research, tips, or experiences unhelpful, it can be horrifying for someone who is just trying to absorb the news of their new MS diagnosis. Instead, focus on how to help make them feel supported.

For People Experiencing a Relapse

It’s important to understand that MS relapses occur only in people with a particular type of the disease called relapsing-remitting MS. About 85 percent of MS diagnoses are of this type. “Relapsing” refers to the return of symptoms, “remitting” to the remission period when symptoms aren’t present.

A person with MS who’s had a relapse is experiencing acute worsening of symptoms, typically including additional physical disability. No one can predict how frequent or severe an MS relapse may be; symptoms can range from mild, such as numbness or fatigue, to severe enough to disrupt functions essential to daily living, such as loss of vision or balance.

They may not last long, or they may be permanent.

Make a Meaningful Connection When Offering Help

Understanding what a person with MS—whether newly diagnosed or relapsing—is going through during this time provides a strong basis for offering compassion in a meaningfully helpful way and saying and doing things that can really make a difference.

Here are some things to consider in aiming for these goals.

Think About the Emotional Effect of a New Diagnosis or Relapse

An MS diagnosis or relapse can come with a host of emotions and there is no "right" reaction. For the newly diagnosed, it can be a time of fear and disorientation. For those experiencing a relapse, it can be disheartening and angering especially coming out of a period of hope when symptoms had stopped progressing

In thinking about how the person close to you is feeling now, keep in mind that not only may her feelings and reactions change with time, but her physical abilities will as well.

Learn to Avoid Unintentionally Rude or Insensitive Comments

These can leave the person with MS feeling emotionally blindsided, very frustrated, and—most unfortunate and unintended of all—unsupported.

To help avoid these upsetting and emotionally distancing remarks, start the conversation by letting the person talk about their diagnosis or relapse in the way that’s most comfortable, whether they have questions about medications, concern about self-injection, or even the larger issue of wanting evidence that life goes on even if MS changes lives over time. Then respond calmly and supportively.

For example:

  • Never say: “It could be worse.”
    You could say: "This is a lot to deal with. Do you want to talk more?"
  • Never say: “It's a blessing in disguise.”
    You could say: "This is awful. You're not alone. I will learn with you about how to manage this."
  • Never say: "Oh, God, what are you going to do?"
    You could say: "What are the options for treating this? How can I help?"

So, what’s the best thing you can say to provide closeness and reassurance? It’s:

"What can I do to help? I am here for you.”

Provide Reassurance

When the body of someone with MS stops functioning normally, it can cause the person a great deal of anxiety, and this can be made worse by side-effects from steroid therapy.

Ways you can support the person close to you include:

  • Let her know you’re available for middle-of-the-night texts or phone calls. That’s when the anxiety seems to get worse.

  • If taking steroids is part of the relapse treatment, the person may be concerned about feeling unusually anxious at times and not knowing why. You can help by reminding her how easy it is to forget that anxiety can be a side-effect of steroid treatment.

Follow Through on Being Available to Help

Many people with MS relapses need extra help for a week or two until the symptoms subside. People who have been recently diagnosed may not know what kind of help or support they will need as their physical abilities change. There are a number of ways you can help lighten this load. For example:

  • Cook and drop off food: Don’t ask if the person wants this. He or she might refuse, thinking it will burden you. It’s important to keep eating during an MS relapse.
  • Offer to drive: Take her to appointments, out for errands, or just out of the house for a change of scenery. During MS relapses, people often experience delayed reaction times and don’t feel comfortable driving. You might also offer to take the kids to the park, zoo, or somewhere else on a weekend day, giving the person with MS time alone to relax and recover.

Learn More About MS

Get more information about the disease from the National Multiple Sclerosis Society and The National Institute of Neurological Disorders and Stroke (NINDS). Your friend or family member will feel supported even more by your taking the time to “get to know” MS.

Be Sure to Follow Up

Keep checking in with the person, even after the worst of the MS relapse is over. The most dramatic symptoms typically subside soon after the first few doses of steroid treatment, but they can “hang on” afterward. In addition, there’s always concern about permanent nerve damage and disability after a relapse, and this won’t be known for several weeks. During that time, and as time goes on, keep telling him or her that you’re available to talk about the MS relapse and the effects it’s having.

What About How You Feel?

Of course, you’re upset about this serious illness in a person close to you. You need comforting, too. Interestingly, you may well find that your efforts to reassure and support someone close to you during a new diagnosis or MS relapse make you feel better, too. Your steady, reliable presence and commitment can make an important difference in minimizing anxiety and concern. For both of you.

Source:

Managing Relapses. National Multiple Sclerosis Society. http://www.nationalmssociety.org/Treating-MS/Managing-Relapses.

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