New to posting

I was diagnosed with Lupus at the age of 18years. I have had lupus for 25years. When I was diagnosed I wasn't given any leaflets or told about any groups and at 18 it was extremely scary. I found work and colleagues very unsympathetic. My parents had never heard of the disease and so decided for themselves it must be all in my head, despite various operations fixing things my lupus had caused. So at a very young age I decided not to trust anyone with my feelings about having Lupus, question myself every time a new symptom showed as to whether it is a real symptom or 'in my head' and never joined any lupus groups or discussed my illness with anyone other than my husband, so for the past 25 years it has been lonely and at times really scary, but today I have broke my silence . I have read many of the articles and to add a bit of positivity, Lupus has come a long way since I was diagnosed. I was told at 24 it wasn't a good choice to have children but under medical supervision I have 2 beauriful healthy children (and thats with having 'sticky blood). I also manage to hold down a part time job and live a very hectic life style. One thing that has helped over the years is to not nap when I feel tired, I nap at a chosen time even if I don't feel tired. For example I come home from work and I set my alarm for an hour and I lay and rest, sometime fall asleep sometimes not but by setting a time for sleep it makes me feel more in control and because it's set like a doctors appt or any appt I don't think about it or feel guilty about it. I just think oh what's next, oh yes sleep for an hour, pick kids up etc etc.

Sorry first post and can't stop typing a lot of years to make up ha ha.

Thanks to anyone who reads.

2 Replies

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  • Hello and welcome, Niccigrace! Twenty five years is a looong time to cope with lupus without the support of others in a similar situation. It sounds as if you must have come through some tough times. Hope you can share more of what you have learned, as well as find some support here. So please do keep posting!

    Mx

  • Hi Niccigrace,

    Welcome to the LUPUS UK HealthUnlocked Community!

    Thank you for sharing your experience and tip with us, I am sure there are other people who feel the same way and will benefit from your post.

    If you want someone to speak to, we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support and advice over the telephone. These contacts mostly have lupus themselves and are volunteers. If you would like more information on having a local contact to speak to, as well as information on local support group meetings you can email me at chanpreet@lupusuk.org.uk

    Wishing you all the best, let us know how you get on.

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