Multiple sclerosis is a difficult disease to live with. With no known cure, patients often find the day-to-day struggle very challenging. But they’re not the only ones who live with the disease — friends, family and loved ones 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.
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 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 circumstances.
2. Think before disclosing anything about MS.
Deciding who to tell about your 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 that 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.
3. Keep the relationship balanced.
While MS affects the entire family, spouses should realize that MS is experienced by both partners. It’s normal for an MS patient’s partner to care and worry, but the National MS Society recommends that the couple try their best to keep the 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 become parents, too.
People with multiple sclerosis are often concerned about the future demands that come with wanting and having children. This can bring additional stress to relationships. But rest assured: according to the National MS Society, “women and men with MS can be successful parents of happy, healthy children.” Start by discussing the topic of pregnancy with your physician.
The organization also offers resources for patients regarding conception, pregnancy, delivery, and breastfeeding. Information about the impact of childbearing on MS patients is also available. If you already have children, find out how to discuss the disease with your kids.
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5. Clear any negativity associated with caring.
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.
6. Isolation is always harmful.
Multiple sclerosis is a rare disease, but there are 400,000 patients in the U.S. in the same boat — and many others who are willing to support them and help out. 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, either online or in person. The National Multiple Sclerosis Society also offers a tele learning program, Tips for People with MS and Their Partners – Planning for the Future.
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