MS never impacts just one person. When a loved one has MS, the lives of spouses, children, parents and siblings are all affected, and they may experience similar emotions to the person with MS such as fear, guilt, anger, denial, grief and anxiety.
Sometimes MS causes a shift in household or financial responsibilities, and may affect a family’s social life or where the family lives. This all adds to the complexity and can change the balance in relationships.
Telling people you have MS
Telling someone about your MS can be difficult. It is OK to take the time to think about how the disclosure might affect your relationship or if it is in your best interest. Friendships can change as a result of MS. Just as it may push some people away, it can also make relationships stronger. Sometimes friends or family members don’t know what to say or may treat you differently. Try to remember that they don’t yet know much about the disease or how to help.
Children have their own unique concerns, fears and questions about your MS that are important to address. When talking to your children it can help to remember that women and men with MS can be successful parents of happy, healthy children and that children are generally less fragile than you think. Open and honest communication is important, and there are plenty of resources online that can help describe MS in an easy to understand way.
Telling people what you need
It is likely that the people who love you don’t necessarily know how best to support you. Think about what you would like from your friends and family and let them know. It could be that:
- They are jumping in to help too much and you would like to be more independent, or you might want them to treat you normally rather than wrapping you up in cotton wool, or you may just want them or to stop asking if you are OK
- You need more time and space to work through your diagnosis, and that you will talk to them when you are ready
- You would like them to do some research so they can understand MS and the different treatment options
- You don’t feel up to doing long or strenuous activities but would still like to spend time with them doing something less strenuous
- You may need to cancel or change plans without notice if you are not feeling well
Check out this video, created by the MS Society, which is a collection of things that people with MS would like their friends and family to know. Share the link – it may help start a conversation!
The information in this embedded video has been developed by the author(s) of the video. Novartis has not been involved in the creation of this content. The intent of providing this material is informational and not as advice. Any information provided by this source should be discussed with your healthcare professional and does not replace their advice.
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References:
- National multiple sclerosis society. Relationships. https://www.nationalmssociety.org/Living-Well-With-MS/Relationships (date of last update 2023).
- MS Trust. 10 ways to help your partner if they have MS. https://www.mstrust.org.uk/news/views-and-comments/10-ways-help-your-partner-if-they-have-ms (last updated 25 July 2017).