“I think illness is a family journey, no matter what the outcome. Everybody has to be allowed to process it and mourn and deal with it in their own way.”
- Marcia Wallace
(Actress, comedienne and the voice of Edna Krabappel on the animated series The Simpsons)
Having a family member diagnosed with any long-term medical condition, not just multiple sclerosis, can be difficult. Given Kelly Osborne’s recent admission to becoming drunk on a plane after reading about the effect MS can have is not surprising – she has not been the first to react in this way and she certainly will not be the last. It can’t be easy if you are a celebrity in the spotlight, constantly being reminded or exposed to news articles about your family member and reporters waiting at the ‘garden gate’.
The truth is having MS affects not only the person with MS, but also the people closest to them: their family, friends, and their carers. Each family is unique and each person’s experience of MS will be different.
Also, how people react to life changing events can vary. Some people may react with immediate feelings of denial, disbelief, shock, anger, fear, sadness or confusion, and become withdrawn from the family. Whilst others may react by appearing completely uninterested and unaffected by a family member’s diagnosis. All these reactions are normal.
Eventually we, as people, learn to accept and adapt, to a greater or lesser extent, to the life-changing situation and our new perspective on life. This may involve having a greater sensitivity to the needs of others; a child’s emotional development can benefit from their experiences of having a family member with MS and how they cope with challenging situations in life; and we may all develop a better understanding of health and how to cope with negative emotions.
Whilst one may be concerned for the family member who has just been diagnosed and how their life and expectations for the future will change, it’s okay to think or feel concerned about how it will affect yourself and personal well being. We are allowed to feel negative about the situation the family has been placed in and to feel upset or express anger. It’s okay to question what the future will hold and the impact on daily lives and emotions.
Many people may bottle up questions in their mind.
A partner may ask:
- “Will our plans or aspirations for the future have to change?”
- “Will I have to give up work to support my partner?”
For children the questions may be simpler:
- “Can mum still take me to football on Saturday?”
- “Will Dad be too tired to read me a bed time story?”
Whilst there is no right or wrong way to deal with a family member being diagnosed with MS, expressing and talking about how one feels is helpful. Bottling up feelings and frustrations does not always help. Hiding feelings can put a great a strain on personal well being but also the on family members around you. Whilst many people may want to hide away and act in denial, this can’t always happen, as some people may have to take on a new role in the family. They may need to help the family member with new symptoms that they are experiencing, such as difficulty with reading due to visual disturbances, or walking or falling over due to numbness. Their role as the main bread winner or person who manages the family finances, paying bills on time, planning holidays may also have to change.
Every family will be different in how and when they discuss MS with their family members. For Kelly Osborne, her route may be to vent her frustrations through the media, for others this may involve having a small family gathering. It is good, and equally important, to maintain the open lines of communication as time goes on and continue these discussions. Find or create opportunities for discussion time to raise any questions you may have about how you are feeling and also how the family member who has been diagnosed feels. There is no right or wrong way to do it, you know your family best.
Looking to the future, when a person has had a family member diagnosed with MS, or they have been busy caring for them, it is very easy to neglect personal needs and well being. It’s important to look after oneself, take time out to be alone, find and maintain support from those around you, be it from other members of the family, or from friends or support’s groups.
MS in the Media
24 May 2019
- MS misdiagnosis
- BBC One's DIY SOS team helps family affected by MS
Invisible symptoms and Me: Martin's story
24 May 2019
In his latest blog Martin Baum discusses how raising awareness of the invisible symptoms of MS can only be a good thing.
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline