I was intrigued by the beginning of a post in the F.A.P. group on Facebook:
Hi. Sorry, but this is a long post: I have just had my session with my psychologist and he suggested I chat with you.
...interesting to read, since I've heard myself saying the same thing about my non-existent belly button; something that must have incredible psychological and symbolic importance for the person who says so...
I have both a good sized desmoid (who I named Harry) and a incisional hernia (who I have named Horatio). The desmoid has been around since 2003 and hernia since 2011 and it is getting bigger. Naming these 'things' helped me cope initially somewhat and tell myself that they are not part of me. But, since November last year, they have grown a little more and are more out there (there is no more they can do medically). The name calling is not working. I detest them. I have now purchased a hernia belt to try and help. Surgically I have been told that I am untouchable as they worry they will lose me on the table - unless I get a bowel obstruction which requires surgery, and only then will they deal with the hernia and desmoid (its in amongst the jejenum and blood supply to the bowel). I find it difficult to accept that they won't look after the hernia and desmoid unless they are pushed because I feel that my psychological concerns to me are equally valid as an argument supporting the surgery. But, anyway, I am currently working on accepting this and moving on.
Anyway, I really detest, hate my desmoid and hernia and that part of my body and find it very difficult to look at that part of me at all (including when dressed). I can be having a great day walking around the shops until I see someone look at my abdomen and then back to my face and then back to my abdomen and then all I feel is disgust and embarrassment and then self-hate because of what I have to deal with and how they make me feel. I immediately move quickly to the ladies bathroom and lock myself in whilst I either cry and/or try positive self talk to change how awful I feel inside. And the thing is, I don't walk around flaunting my abdomen - it's not there for everyone to see.
So, what I would like to know, from anyone dealing with similar circumstances, is how are you coping and dealing with this? what do you do? I write in a journal and I try and practice mindfulness and obviously I talk to a psychologist, but, still I have this unending deep level of disgust and hate for the impact of the hernia and desmoid and the area in my body they are situated.
Although I don't experience desmoid tumors, I felt that the reason for her psychologist suggesting she ask FAPers about how they think she should respond to the situation, or how do they respond to the situation is so that someone will offer a productive coping mechanism applicable to her situation... removing psycho-theoretic conjecture and educated guesses by someone most probably without any related personal experiences on the subject. How do we relate to the situation and cope with it? So I responded:
Since the woman who shared the original post lives in Australia, I didn't receive her response until this morning. Truthfully I was a bit surprised...
Thank you so much Ross for sharing so much; I read this last night and it really hit home. I couldn't respond because a great deal of what you explained so eloquently was how I have been feeling inside and had been stewing over over the years. I was first diagnosed in 2001. In 2002 they gave me 6 months - well that was what my parents were told. I made it through then and in 2012 was told bluntly it could be any given day. Quite often I say it is what it is. I am OK with there being no guarantee on where I will be one month one year etc from now since I am now used to the idea. I suppose naming these hernia and desmoids might have given me some distance from all that they are. The fact that they are different now to last year has I think shaken me and they have taken my focus from what I enjoy from who I knew myself to be