Posted by kilo8 on May 25, 2015, at 16:29:46
I have GAD,depression and OCD.
I had it since childhood. Always being afraid of things and diseases.
Up until age 20 I thought I was healthy. Doctors told me I am healthy and when I felt like something's wrong with me I was treated like a hypochondriac.
But then things started to change. Suddenly I got health issues and symptoms which could not be denied anymore.
This made my fears worse cause then I realized that I'm not healthy after all.
And then at age 28 I got a diagnosis which was totally shocking to me. I wasn't expecting anything like this. Basically I went to a dermatologist cause I noticed my upper body was covered with very subtle skin tags which are flat and look like normal fibromas. I thought this is probably simply fibromas.
But then the dermatologist said that these aren't normal fibromas but very rare fibromas called fibrofolliculomas. And these fibrofolliculomas are linked to a very rare dangerous syndrome calld Birt Hogg Dube syndrome.
I then found out that this syndrome causes these fibromas but also kidney tumors and pneumothorax of the lung.
This diagnosis absolutely shattered me.
It has been many years since the diagnosis and I am still not over it. I simply cannot accept it or get over it. Every time when I look at myself in the mirror and then see all these fibromas I feel absolutely hopeless and miserable.
I dont know how to deal with this. I always think why does this happen to me? Why do I have so many things wrong with me?
I mean how big are the chances of having a very rare genetic syndrome!?
And this syndrome isn't my only health issue. I have many other things which either can't be cured or doctors cannot tell me what it is.I mean all the years before at least I could think maybe I am really a hypochondriac maybe I simply pay too much attention to my body. But after this diagnosis I cannot think this anymore. This diagnosis changed everything.
The dermatologist also told me that I could get a genetic test but he said that the clinical signs are pretty clear and that getting it confirmed would change nothing. It wouldn't have any effects cause you can't cure it anyway.
I really wish there was a chance that these fibromas are something different but I don't think there is a chance because I read the description of the syndrome and looked at pics of people who have it and these fibromas look just like mine and I also have them in exactly the places where people usually get them (face,back,chest).I simply dont know how to deal with this. Since I have GAD and OCD maybe it's impossible. I mean it has been years since I got the diagnosis and I havent been able to deal with it.
Also going to therapists and being told stuff like "you gotta accept it" doesnt help me.
also antidepressants dont help me. I feel really hopeless.
I simply do not have the strength to deal with life and at the same time deal with this feeling of hopelessness which I always get when I am confronted with my health issues.What's also bad is that now where I was told I have a rare genetic syndrome I am now even more worried and think what if this isn't the only rare thing? What if I have other rare things, too? What if other health issues which I have and where doctors dont know what it is are also linked to something rare and they simply dont know it? This makes my fears even worse. :(
poster:kilo8
thread:1079208
URL: http://www.dr-bob.org/babble/psycho/20150512/msgs/1079208.html