People with MS (like all people!) live in a social environment.  While MS may exist within you, you live with it while living and working out in the world, and while having relationships with other people.

For many people living with MS, talking about MS with family, friends, colleagues, clinicians, and others can be a challenge or even a source of conflict.  For some, the challenge is in how to talk with others about MS, particularly when the other person may not really understand what it is like to live with MS.  For others, it might relate to the fact that family or friends may also be playing care-partner roles, which is new to them and requires its own adjustment.  And in other cases, the challenge may simply be in communication itself, as MS-related cognitive changes can make it more difficult to organize thoughts or come up with the word you are looking for.

Relationships and support are central to living well with MS.  They can impact your symptoms, mood, and sense of well-being.  Our goal in this section is to share ideas for how to have the best communication with those who share in your MS experience.

Tips for care-partners

As detailed throughout this section, a carepartnership can be a complicated relationship.  Just as we have suggested specific strategies to the person living with MS, we have a few to suggest for the carepartner as well:

  1. Ask for specific ways to help. We highlighted earlier in this section that a common “error” in communication about MS is the tendency to describe what is wrong without asking for a specific type of help.  This puts pressure on you, as the carepartner, to guess what is needed.  We have suggested people living with MS be more specific in asking for help.  You can help with this by asking what help they would like, if they do not bring it up themselves.
  2. Take care of yourself. Being a carepartner to a person with MS is more of a marathon than a sprint.  While it may be tempting to give yourself over completely to the person with MS, particularly if you care deeply about them, it is important to take care of yourself, too.  While it may feel selfish to take time for yourself, it will ultimately allow you to be a better caregiver.
  3. Being a carepartner does not mean you need to do everything; rather, part of your role can be helping the person with MS do what they can. Out of a place of helpfulness, carepartners are often eager to jump in and do tasks for people with MS. In some cases, this help includes doing things that the person with MS can actually do or could learn to do if done differently.  If that is the case, then doing the task for them may accidentally add to their disability.  Therefore, it is important to strike a balance, where you provide help when needed, but provide support in the adjustment process for other tasks.