This is an automated archive.
The original was posted on /r/relationships by /u/Biglifebump on 2024-01-23 13:34:42+00:00.
This may be awfully long and confusing.
Im 26 female and I have neurofibromatosis type 1.
Its a rare progressive (Worse with age) genetic disorder that causes mostly non-cancerous tumors to grow anywhere in my body. Ive known since I was 4. I would suggest googling the condition to understand the physical aspect of it.
I have a mostly 'mild case' in terms of the disease, but for the average person, the things I have sound terrifying. Im happy to elaborate on my exact symptoms if people care to know.
Growing up , the condition never really affected me, often I forgot I had it. I went to university despite the condition being associated wth learning difficulties. Looking at me with clothes on, you wouldnt know i have it and I have no pain or 'major' problems with my tumors, at least not yet. Im one of the lucky ones. I do have some issues though, and every pain or ache I get scares me.
Generally speaking, the scariest complications of NF1 are increased risk of brain cancer, breast cancer, stroke and a type of sarcoma cancer called MPNST- and there are other things that can go wrong too. Alot of people are in constant pain and have other strange things that are not well understood - in general its a condition thats not really understood. Obviously, because its genetic too - anyone with it has a 50/50 chance of passing it onto any children if they dont take the IVF or CVS (Pre-natal testing than abortion) route, too. Some people with NF1 have major complications and others do not, although from my experience this condition causes suffering to all who live with it. Life expectancy is described as 8 -15 years less than the average in some papers, in other its described as 'normal'.
Im a spontaneous mutation, which means the genetic mutation happened at my conception, so no one else in my family has it or passed it on to me. My parents ignored the problems it caused I had growing up, and looking back, I was left to dealt with them alone - they buried their heads in the sand and tbh i think im subconsciously ashamed to have this condition. Ive battled depression and anxiety for over 10 years and I was physically and verbally bullied in school because of my small frame and lack of coordination etc. I feel so alone because i never met anyone in my life thats female and young with this condition.
Under 2 years ago, I entered into my first relationship with the sweetest guy and this what my post is about today. Im struggling to deal with my own thoughts and anxieties around my condition and my future with him, as much as i love him. I told him about my condition one month in and he still accepted me. I dont understand it, and often it feels surreal and that nothing good can come of this, because Im so utterly used to disappointment and being burned.
Im afraid of hurting him, Im afraid of making him miserable with how much I feel down and my health as it progresses downwards, and secretly of course Im afraid of him leaving me even if i do everything right and he has never even shown signs of this. I have so much pain inside of me from everything Ive experienced but I just keep going and trying to put on a brave face and live life normally. I go to work and pretend im okay but im depressed about my future because NF1 is progressive and so rare and there are not treatment options (at all).I dont want to be a burden, but Im already constantly feeling down about my condition when I think of being disfigured by the tumors, being in constant pain or getting cancer and hurting hm.
I just want to be normal and have a family and enjoy the simple things in life. I want to grow old and have normal skin.
We've been dating for over a year and i recently moved in with him, things are good - but when he talks about getting married i just cant even feel happiness sometimes because Im just so terrified. I have been completely honest with every aspect of my condition - yet he still talks of the future alot and that he will always be there for me. He talks about having children and growing old and its almost like he forgets sometimes and this scares me that he doesnt understand or doesnt want to understand.
Im trying to be the best girlfriend I can be, where practical. I want to spend every waking moment caring for him and loving him and not sweating the small stuff. He is very fit, attractive, sensitive, kind all good things in between - he tells me he loves my body and my personality and says sweet things but i still cant get my emotions under control.
Does anyone have advice managing a relationship with a chronic condition like this? I feel like im on a path of self destruction but Its just I find it so so so difficult and lonely.
My partner works nightshift too, so when im home alone and tired from work I get extremely sad even though i would never tell him this, because I understand he needs to work those hours. I see a psychologist, but tbh she makes me feel worse some times. I often feel stuck trying to my explain myself because firstly no one has even heard of this condition most of the time. I spend half my time explaining my conditions complications before i get anywhere.
TL;DR; how do I manage my chronic incurable genetic condition in a relationship?