What might be helpful to think about if you or your partner have MS?
These are notes I wrote for a talk, so they are rather cryptic. I hope they make sense.
MS makes it harder to understand each other.
Putting yourself in other person’s shoes does not work if one of you has a neurological condition
Other people’s reactions to illness not the same as ours
Hard to touch delicate subjects – so hard to find out what something means to the other
Feelings get in the way of talking:
Guilt – it’s my fault, it’s my MS – what am I doing to them?
Anger – if only they would see it differently/not have MS/ behave differently
Fear – the future can ruin the present
(But talking can help)
MS affects behaviour
Illness behaviour
Housework
Invisible symptoms confuse the picture
Fatigue; pain; affects on subtle emotional responses. Decision-making difficulties.
Reactions to Loss
Adjusting your mind to any loss takes time. And it hurts.
Everyone reacts differently.
Meaning of loss different for each. Erection problems: mobility; sensation: ‘I’m useless/impotent’; decision-making .
Withdrawal. Licking your wounds. ‘DON’T TELL ANYONE’
Talking to others; telling everyone
People expect to recover more quickly than they do; it generally takes two years before a serious loss becomes incorporated into daily expectations. (More for some losses/some situations; less for others)
Parenting
GUILT & ANGER .
How should a parent with MS behave? How should my children behave?
How do I / they behave? – hard even to look and find out.
Parents can help their children. This may be a surprise. When parents do find out what the children think or feel, they can be astonished to find how much they can help. Children like to know their parents are concerned enough about the things that worry them. ( eg. What would happen if mummy or daddy died?) Such topics are hard to raise. (Read My Mum Needs Me?).
So what can people do to maintain their relationships in the face of MS?
Assumptions and guesses can be useful, but need checking out . ?Try to find out what you don’t know – eg what MS or a symptom means to you and to the other person? – may be able to ask; may need help asking.
Know it is hard for everyone, you and them. Martyrs aren’t comfortable to live with.
Know you will all get it wrong – and be ready to forgive. The quality of mercy has much to recommend it. So does a good sense of humour.
Talking (with the right person) can help. Partner? Counsellor? Friends? Other people living with MS?
Find sources of pleasure – in each other and life in general. Most symptoms become ‘normal’ after two years. MS does not have to spoil everything.
Suggested reading:
Segal, Julia. (2017) The Trouble with Illness. How Illness and Disability Affects Relationships. Jessica Kingsley, London, UK
Segal, J.C. (1985) Phantasy in Everyday Life, Pelican Books. Reprinted Karnac Books 1995, 2005 London, and Aronson USA 1996. www.karnacbooks.com (Written before I knew anything about MS; based on work with Relate.)
Segal, Julia and Simkins, John. (1993) My Mum Needs Me. Helping children with ill or disabled parents. Penguin Books, London. For parents. Out of print but available on the internet.
Julia Segal and John Simkins. Helping children with ill or disabled parents; A guide for professionals. Jessica Kingsley, London, September 1996 pb £15.95 post@jkp.com www.jkp.com (My Mum Needs Me re-written for professionals.)
thetroublewithillness 