Speaking Out ~ Living With HD

Some Common Reactions

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Some Common Reactions
Chapter 4 Young People At-Risk
The temptation to blame parents is also strong, and it is wise to remember that parents themselves may be feeling guilty.
 
They may or may not have known about HD when they decided to have children. If they didn't know, they may be blaming their own parents for this; if they did know, they may well have taken the risks into consideration and still thought it was worthwhile for their own and their children's sake. 
 
A frank discussion and explanation is the obvious approach to the problem, but children and/or parents may find this difficult and it may take time to fully understand each other's  feelings.
 
You may also be worried that even if your friends know about HD they may not understand the pressure you are under or that they will treat you differently. You may feel that boy- or girlfriends will be discouraged and you will never meet anyone who wants to marry you, which also brings out the problem of exactly when, in terms of a relationship, is the right time to tell someone
If you are already engaged or married, the problem could be how much to share the knowledge with your partner and how the relationship will be affected.
 
There is no easy answer except perhaps that  the information has to be shared whatever its consequences. To keep such a secret would place an enormous burden on you, and the fact that there is something hiddenis bound to cause difficulties with your partner.
 
You may choose to limit the number of people you tell, but those close to you really need to know.
 
Even if the knowledge should cause a breakdown in a relationship, it is better to establish early on that your  future partner or friend cannot cope with the implication of the disease, rather than at a crisis later. Not having been given the facts can lead to bitterness in husband or wife and greater likelihood of rejection.
 
Sharing your anxieties with other people can help you to see that some of these worries are normal in all young people whilst others are peculiar to HD. Such understanding and reassurance can help.