6 Tips for MS Patients, Families & Loved Ones

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by Marta Ribeiro |

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Multiple sclerosis is a difficult disease to live with. Still with no known cure, sometimes you may find the day-to-day struggle very challenging. But MS patients are not the only ones who live with the disease — friends, family and loved also have to learn how to deal. To help everyone cope better, we’ve put together a list of six tips for patients, families, and loved ones. (source: National MS Society)

1. With or Without MS, Relationships are Not Easy

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All relationships require energy and effort to go through up and downs — even without a disease to complicate matters. It is almost inevitable that multiple sclerosis (MS) will add to the challenge. Recognizing that MS affects the whole family is the first step to coping with MS in personal interactions. Many times, learning to live with the disease brings spouses, families, and friends closer together. It is important to never compare families and relationships to your own, under any circumstance.

But can emotional health influence MS treatment outcomes?

2. Think Before Disclosing About MS

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Deciding who to tell about the multiple sclerosis diagnosis should be considered.  Some people may want to tell the whole family, while others may prefer to tell just their partner and no one else. No two patients are exactly alike when it comes to disclosing their personal health information. Always remember, once the news is out it cannot be taken back. When to disclose the diagnosis is as important as how much information to tell. Patients should think about what loved ones need to know about MS so they can understand the disease.

A team in the MS Melbourne Cycle, an annual biking challenge to raise money for MS Australia, built a bicycle that nearly replicates the physical difficulties and discomforts that typify multiple sclerosis (MS). Read about it here.

3. Keep the Relationship Balanced

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While MS affects the entire family, spouses should realize especially that MS is experienced by both of them. It’s normal for the partner of an MS patient to care and worry, but the National MS Society recommends that the couple should keep their relationship healthy and balanced. For that, it’s important for both to give and receive in the relationship in order to preserve communication and intimacy.

4. MS Patients Can Be Parents Too

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People with multiple sclerosis are often concerned about future demands that come with wanting and having children. This can bring additional stress to relationships. But be assured: “women and men with MS can be successful parents of happy, healthy children,” according to the National MS Society. Start by discussing the topic of pregnancy with your physician. The organization also offers resources for patients about conception, pregnancy, delivery, and breastfeeding. Information about the impact of childbearing on MS, parenting is also available. If you already have children, find out how to discuss the disease with your kids.

According to a study, fatigue – the most commonly reported symptom in patients with multiple sclerosis (MS) – is associated with disease comorbidities such as depression, irritable bowel syndrome, migraine, and anxiety.

5. Clear Any Negativity Associated with Caring

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In most cases, the caregivers of patients with multiple sclerosis are family members. Sometimes, patients may feel guilty or sad about the situation. However, there is no reason for associating caring for a loved one with anything negative. In fact, caring for someone you love who struggles with a chronic disease like MS can be very rewarding. The opportunity to share concern and effort can bring people closer together. This doesn’t mean that caring isn’t difficult. Being a caregiver can be physically and emotionally exhausting, but it’s important to avoid projecting negativity when help is needed.

6. Isolation is Always Harmful

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Multiple sclerosis is a rare disease, but there are 400,000 patients in the U.S. in that boat — and many others who are willing to give support and help. There is no reason for a patient to be isolated. Being alone, or feeling alone, can lead to sadness and depression. Patients, family members, and other loved ones can seek help from MS support groups. On line or in person, people can share thoughts and feelings to ease the burden.  The National Multiple Sclerosis Society also offers Tips for People with MS and Their Partners – Planning for the Future Telelearning Recording.

But can emotional health influence MS treatment outcomes?

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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