One of the biggest challenges that comes with MS is finding the best way to manage family issues. For those recently diagnosed, one of the first things that probably came into your mind was: How am I going to tell my family and friends? For those living with MS for some time, perhaps it’s: How do I maintain my sense of independence while allowing loved ones to help?
The first thing to remember is that facing MS is not easy, for you and for those who care about you. Confiding in people when first diagnosed, and working out ways to talk with a husband or wife, telling children, and informing co-workers can add additional stress.
It’s important to think about MS from a different perspective. All of the people closest to you will likely be supportive, and they’ll want to know how to help. Deciding when and how to share the information with everyone is an important step to helping you develop an overall MS management plan.
It might also help to learn ways to talk about your MS, what’s happening in your body, and living with MS long term and managing its progression. Remember that it’s a process, and that you don’t need all of the answers right away.
Understanding everyone’s feelings
Many of the feelings that you will have are quite normal. Shock, grief, anxiety, and anger are all typical reactions to being diagnosed with MS, and you should give yourself some time to work through these feelings.
At the same time, your family is probably going through many of these very same feelings and emotions. It’s normal for them to feel concern for your well being, develop a real fear of the unknown, and worry about everything in their lives changing. Younger family members and children will worry about your health and about how your illness will impact their lives and relationship with you. Partners, children, and parents will likely feel the same anger that you feel over this unexpected change.
The good news: it can be done. MS often brings families together and strengthens those bonds. No two people handle MS the same way, and families are no different. Find the balance that works for your situation, and for your family. But be patient. It often takes some time to adjust to your new circumstances. And there are many ways to stay focused and positive.
Keeping lines of communication open
The stresses of dealing with MS can be overwhelming. It’s common to find it difficult to discuss your own MS, and friends and family can often feel just as uncomfortable. It’s not easy to talk about the disease, ask difficult questions, or to discuss things like magnetic resonance imaging (MRI) scans and disability progression. And because MS changes over time and is different for everyone, there are often topics that are easier to discuss one day but difficult the next.
But be as open as you can. Talk about the tough things, and find someone you can confide in. Being afraid of certain subjects, or closing yourself off from those who can give you comfort, often makes managing MS more difficult. Finding ways to be open and honest can help you cope and provides your family and friends with the sense that they are helping and giving you support.
So confront the worry, fear, myths and misconceptions, and the realities of living with MS. The more you can do it together, the better off you all will be. Don’t hesitate to reach out to your local MS organisations, where you can find more support and information for families facing MS. And try to find the time to talk about MS and allow everyone to openly share their feelings. You just might find that talking it out can lead to new (and better) ideas and solutions.
MS may be a big shock to the entire family
Be patient and give yourself (and your family) time to adjust
People want to help, so try to find ways to let them