I'm 25 and suffer from Narcolepsy and cataplexy. I work for the NHS and was off on sick leave for 6 months last year whilst I was waiting to have my tests and for the official diagnosis. I had to go off during this time because my boss thought that I was too much of a risk to patients and myself in the clinical environment that I work in. I was able to return to work once my tablets (Modafinil) had taken effect.
My husband and I would like to try for a baby in the near future but the only options seem to be; stop working and come off the Modafinil during conception, pregnancy and breast feeding and have a (hopefully) healthy baby but no money; keep taking my tablets so I can continue earning and get my full maternity leave and pay from my work but risk my health and the baby?s even though the risks aren?t really known; stop taking my meds for conception and the first trimester and then start again after this and go back to work for a few months before going on maternity leave.
Obviously my ideal scenario would be to be able to continue working but it?s unlikely that my employer can find anything else for me to do that is without risk for me. I think the only benefit I can apply for is disability living allowance. I would still be employed by the NHS but I think it would be classed as a career break or personal leave and so I wouldn?t receive any pay for this. In a way, I don?t see why they should pay me anything because my Narcolepsy isn?t their fault but it?s also not mine! I feel like I?m being punished for having a disability and wanting a baby because in order to do so I have to give up work and worry about finances ? it could take months or years for us to conceive on top of everything else! We really want to have a family and of course are both willing to suck it up and be skint if we have to, but I just wondered if I?m missing anything. Can anyone help me please? What do other Narcoleptic Mums do?!