Dealing with stress and coping

The stress involved in caring for a child with a long-term illness is considerable, but these tips might ease the strain:

There’s no way to “fix” a fear or feeling but here are some ways in which you can help. 

Break problems into manageable parts. If your child's treatment is expected to be given over an extended time, view it in more manageable time blocks. Planning a week or a month at a time may be less overwhelming.

  • Try to get plenty of rest and, to the extent possible, pay attention to your relationship with your spouse, hobbies, and friendships.

  • Depend on friends. Let others — relatives, friends — share responsibilities of caring for your child. Remember that you can't do it all.

  • Everyone handles stress differently. If you and your spouse have distinct coping styles, talk about them and try to accommodate them. Don't pretend that they don't exist.

  • Develop working partnerships with health care professionals and the MPS support team. Realise that you are all part of the team. Ask questions and learn all you can about your child's illness.

  • Consult other parents, they can offer information and understanding

Useful links

 

For advocacy

For adults and young people

For parent support

Helpline

 

Our helpline is open 9-5pm

Monday-Friday:

0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

Contact us

Complete the form below to send a message to the advocacy team

Contact the support and advocacy team

Our helpline is open 9-5pm Monday-Friday: 0345 389 9901 or you can email us
Out of hours support line: open 5pm-10pm Monday-Friday and weekends: 07712 653 258 

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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0345 389 9901

Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

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© 2020 Society for Mucopolysaccharide Diseases