[ellenModerator]

One of the issues which emerged from the first Myeloma UK Carers Infoday held in Newcastle earlier this year, was that carers have a very strong sense of guilt.

I wonder if anyone can relate to that or share your experiences for the benefit of others.

Ellen

[bandityogaParticipant]

Hi Ellen

I feel guilty that I am healthy and try to do as much for Ian as I can. I wish that Ian had not had myeloma and put my life on hold to care for him.

Maureen

[gilllParticipant]

Good discussion on this in London today, thanks Ellen and Debbie

[emsieParticipant]

Hi Ellen

I don’t feel guilt to be honest. I do feel cheated that our entire lives are unrecognisable since diagnosis.

I feel invisible – I have been really unwell myself for many years with several chronic illnesses and since my hubby was diagnosed 27 months ago none of that seems to matter any more – I have to take full caring responsibility for my husband and the children, whilst continuing to work full time otherwise we would have no income. The fact that I am in constant pain and actually take more meds/pain killers than he does, doesn’t seem to matter to anyone.

Most of all though I feel helpless – I see him suffering and desperately want to make a difference to his suffering but can’t – It’s not guilt per se – more despair that I can’t make things better for him.

[lindawintonParticipant]

Hi Emsie, would you feel able to talk to someone on a one to one basis to at the very least off load/share your feelings. Ellen and the team are very good. You’ve got a lot on your plate and your illness/pain is no less important. Is your GP understanding of your situation? Do either you or your husband attend a Myeloma Support Group?

I hope the pressures of your situation easy.

Kind regards

Linda

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