Daughter in demanding college program battling lupus everyday.

[Justamom]

My daughter is 19 and just finished her first sememster at college 1/2 way across the country so I am not there to support or advocate for her as I have been since she was 14 and got sick. She is in an extremely demanding program which must maintain 3.5gpa or lose her program for nursing. She was hospitalized once for 8 days during semester and a couple teachers suggested she quit college! She persevered and was able to finish with great grades and excruciating exhaustion and pain. She is home on Christmas break now and scared to go back knowing the toll it took on her to finish as she did. I am scared to death that the stress is complicating her Lupus, (it appears it has) but she is so determined to be a nurse someday and help other pediatric patients with pain like she has had. I dont know how to support her and hate that she is so far away that I cannot be there to help her. She was so terribly treated in our hometown throughout school that she needed to go as far away as possible to college and start fresh. The stigma attached to looking good but feeling like death is too hard to explain to adults much less her classmates so the judging by teachers and her peers is horrible. I too have SLE and am in pain every single day, so I understand what her pain is but I dont have the demands that she has. I cant ask her to quit school and not pursue her dreams, but how do we find a balance and still afford her the experience of starting over somewhere else? Sorry for the long post, I am lost!

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

You should never feel you have to apologise for writing. This is what LUpus Patients Understanding & Support (LUPUS) is for! I can identify with you as it is worse to have to watch one's child suffer and feel so helpless and powerless to help.

Irrespective of the course she is studying, her tutors should be there to help support her. This is especially true when there is talk about "equality" and "disability". Her specialist ought to be able to help her vis à vis pain control. Apart from the physical, there is also the psychological/emotional, which is the speciality of LUpus Patients Understanding & Support (LUPUS).

Are you/your daughter receiving any form of psychological support? Although your focus might be on the physical, I would like to suggest that there is a psychological component which is frequently not addressed by physicians. By this I do not mean the "it is all in your mind"! I mean that the physical and the psychological are connected and not separate!

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends. If you need to talk more, please do so either here, at the LuPUS MB or by email: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Freckle1000 Volunteer]

Hi.

I'm 48 years of age now, but acquired lupus when I was about 14 years of age.

When I went on to university I found reducing the number of academic units I had to get through per year, as well as defering a year at one stage helpful. It's incredibly traumatic instantly leaping from the really nasty experiences of adolescence & lupus (my experiences were similar) - strait into a the challenges of higher education. I would agree with Ros that taking time to self nurture and deal with the psychological is important at your daughters stage of life. Issues of serious illness combined with the poor behaviour of people around you is something incredibly difficult for anybody to process and is the sort of baggage that can drag you down without good psychological support. I really wish I had some good professional coucelling at that age. When I was at uni I felt like I had emerged from another planet and was still too young to really quite grasp why.