Hi °C | Lo °C My husband has been diagnosed with MS. We're heartbroken, naturally, but conscious of trying to stay as positive as we can for our children, who are aged 13, nine and five.
I have always had a policy of total openness with them so, for example, when questions about babies and sex come up, I give them as honest an answer as possible. For the last year or more, he has struggled with various health issues, which in hindsight were all MS related.
We told our children he was going to the doctor for more tests and said we would keep them updated as to what the result was. Since we found out, we have both been tongue-tied.
Our teenager has asked us and I just said we didn't get the results back. Our middle child, who is always quite sensitive, asked me a few nights ago if I was okay and was daddy very sick.
I could barely answer her. She must sense that there has been a different atmosphere in the house. I want to be as honest with them as I can, yet I'm terrified of their questions.
I switched channels recently when a case of a woman with MS who is in the courts made news headlines. I know I can protect my youngest from most information but the older two, particularly our teen, will go straight to the internet and start googling.
My husband doesn't want to talk about it at all. I have dealt with any phone calls from work or relatives and he has asked me to say nothing to our children.
I don't know if he is right. When do they deserve to know? What do they deserve to know? He is evidently depressed at the moment but the only time he brightens up is when the children are around. He seems to forget his diagnosis and just start living for the moment if they are in the room.
In the meantime I'm trying to figure out how we are going to survive financially, how we will afford our increasing medical bills and how I will cope dealing with a sick partner.
I guess part of me feels I am dealing with this alone as he doesn't want people knowing. If the children knew a little of what was going on, I wouldn't feel like I was walking on eggshells with everyone and trying to hold back my tears daily.
This is an incredibly difficult time for both of you and not one that you can come to terms with in a couple of days. As the partner, it's tough to know how to react, but for the moment it may be easier just to take your lead from your husband.
He has to begin to get his head around the diagnosis. It's a lonely time for you now but that will change very soon. With a little time, it should become clear when you can start telling your children and how you go about it.
Multiple Sclerosis is an unpredictable illness and the symptoms may not necessarily affect daily life for considerable periods. It's natural when initially diagnosed with an illness of this nature to research as much information as you possibly can.
This can become overwhelming very quickly as graphic details of every stage of the disease are up there on the internet. The fact is that every person's experience of the illness differs, as does their partner's responses.
You and your husband are better advised listening to your medical specialist and seeking out responses from the MS Society of Ireland rather than adhering to advice from strangers over the net.
As with any serious diagnosis, the first reaction is usually shock. No wonder your husband doesn't want to talk to work or your children about it as he has to come to terms with what it all means for him. And coming to terms with an illness is an ongoing process.
Just when he accepts one aspect of the diagnosis, he may be confronted with another. This won't be easy, but he needs to know that you have his back.
If he says he doesn't want to tell people right now it's important that the person he most trusts stands by that. It's possible he has no concept at the moment of how troubling this is for you.
As days go by, you should be able to explain that you may need a relative or friend that you can confide in to help you through this. Choose someone who you know both of you trust and you can confide in. If that doesn't satisfy him, there is no reason for you not to contact the MS society or a professional counsellor elsewhere to help you through this.
It's great that you are so honest with your children, but with an illness you will probably have to deal with it in stages and curtail your information depending on their age.
To a younger child, they may fear that illness means death so you have to be specific about the long-term nature of the condition. Also, ensure that they don't feel guilty about it and think that it's something that they are responsible for or that it may be contagious.
Children are hugely perceptive as you point out, and one of yours has already figured out something is wrong. If they do start internalising it, you may well notice they become more clingy or withdrawn and start having nightmares.
There's no right or wrong way to deal with talking to them about it. Some parents decide they don't want to worry their children for a few years and hold off until the symptoms are apparent. The problems start when it's obvious something is amiss and you continue trying to hide it.
Older children will usually ask more specific questions. In ways you can be honest with them about how unpredictable the illness is. It's a condition that you will all have to face in stages so it makes sense to explain that to them too.
Try to ensure that they feel they can ask you about it at any time, so it doesn't become a taboo subject. It would be best for both of you to tell them together. It will help to see that their father is hopefully coping and will seem less frightening if he is able to chat openly about it.
They should feel they can talk to you both about it at any time so as to normalise it as much as possible.
It is important for all of you to have support through this. For the moment, you may be the only support your husband wants.
You say he is depressed about it, which is perfectly natural. Depression can also in itself be a symptom of MS so it's one to keep an eye on.
Don't overwhelm yourself with questions you don't have the answers for. Right now medical bills might not be the priority and if not then focus on what you can do about the current challenges facing you.
Be gentle on yourself.
No one knows exactly what to do at times like this but you do know your family and you will instinctively do what's right for them.
Irish Independent
