Support From Family and Friends of a Loved One Diagnosed With MS
Last updated: May 2023
When someone is diagnosed with a chronic disease such as multiple sclerosis, it can be a shock not only to the one diagnosed but also to the family and friends.
Both the one diagnosed and the loved ones may go through the five stages of grief as described by Kubler-Ross. The five stages of grief are denial/shock, anger, bargaining, depression, and at some point, possibly acceptance. These stages are not linear and can be experienced quickly or very slowly.
Listening to the person diagnosed
When I work with clients that have been diagnosed with a chronic disease or the family and friends of someone diagnosed, I encourage FANOS to help with communication. FANOS is an acronym for Feelings, Acknowledge, Needs, Ownership, and Self-care. This communication tool can be helpful during a very difficult time so that the one diagnosed doesn’t feel unheard, and the loved ones also feel heard. The way the communication works is that one person speaks at a time, and the others just listen without interrupting. The one speaking would start with:
- I Feel…
- I Acknowledge… (something the one speaking can acknowledge about the other)
- I Need…
- I Own (the one speaking has the opportunity to own something that they could have communicated differently, or an action they could have done differently with the other)
- My Selfcare is…
After the one speaking is done, then it’s the other person's turn. Once everyone has had a chance to communicate, then there can be open communication.
Expressing our needs
It’s very important to point out that this communication tool should be done when everyone is in a calm state and not arguing. At the beginning, this communication tool may feel awkward. But the more it’s practiced, the smoother it can go. And more importantly, both the one diagnosed and the loved ones can feel heard and can work together to best support each other.
I think FANOS is a great way to have our needs expressed, which is so important for all involved to be able to express this. Sometimes the one diagnosed may not know what they need in the moment, but once they are able to express their need(s), family and friends can respond to those needs and vice versa.
Giving each other space
Another topic that comes up is the need for space for the one diagnosed. It may be difficult for a family member or friend to understand this when what they want to do is help however possible. For the one diagnosed, it can be difficult to ask for the space. But that space can be important.
The one diagnosed may be in shock, angry, or depressed, and need time to process and gather information about MS from reliable sources. I think loved ones can help by honoring this request. It is also important to note that there should be a balance between having space and making sure it doesn’t turn into isolation and depression. Withdrawing from family and friends after a diagnosis is not uncommon, as long as everyone comes back together and starts communicating to know they are heard and what is needed to navigate the diagnosis.
There isn’t a one-size-fits-all when someone is diagnosed with MS. It is a process of learning when to give each other space and learning healthy communication methods to help everyone involved work together to support each other through the diagnosis.
Support can happen when there is time to process, there is space when it's needed, and healthy communication. If everyone involved works on this, it can help the one diagnosed feel heard, seen, and supported. Family and friends can also feel heard and know how to best support their loved one with empathy.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: