I have had TN for over 10 yrs and have kept it a secret from everyone in my life except parents, siblings, and husband all this time, and have always told them to not tel people about me. I grew up having a disability, epilepsy, and hated how that was "my name." Because I hugely resent the idea of now- this life consuming condition becoming "my name," I haven't explained/mentioned it to people all these years. So it's only natural that so many relatives and friends and every person you make conversation with wonders "Why haven't you had any career and don't carry on heavy work loads for life in general?" "You need to get a job." "What do you do all day, aren't you bored?" "Why are you always so lazy?......I have always just said things like "I was meant to be a house wife", "I tried out the career thing and decided I'm more meant for charity work (which I can select my own hours for)," "I like to enjoy the simpler things in life.".....After all these years I am finally coming to a point that I think I'm finally going to not keep it a secret because I'm tired of the same old questions..... I would love to hear how any of you guys have handled it over the years? It's such a tough decision for me to make because once people know of it then theres a HUGE new world of questions that people will have for you all the time. THANK YOU FOR YOUR THOUGHTS!!!!!!!! It's hugely appreciated!!!
I’ve always been open about my condition but then I’ve not grown up with an existing condition like you have. I’ve had to tell co workers and my boss so they understand, especially when I’m off ill as I am currently. In my experience telling people is worth it but the results can be mixed, don’t expect everyone to understand. Sometimes I win there was something physical like turning blue so people could tell I’m not making this up! Good luck with your decision
i have never kept it a secret since i was diagnosed after suffering for ten years and not knowing what was wrong i was diagnosed about 8 years ago and although i dont talk about it much cos i dont want to be a winger or seen as a tragic case i do tell people whats wrong when i am suffering and most people that are in my life even some that i have knownfor twenty yearsstill ask all the same questions over and over and dont remember from one bout to the next what tn is or that i have it....only last week a man that i have known socially and worked with for many years who has seen me writhe in agony many times asked how i was and said dont you have some joint problem...i stared at a loss for words and he said sorry is it a back problem...i have been here so many times with him that i decided to never have this conversation with him again so i said no you must be confusing me with someone else i am fine thanks...it felt so good that i have decided to try this approach with the many people that i have known for a long time who never remember ...so good luck with your quest to educate your friends...mine failed but hopnestly telling my story over and over doesnt help me at all my main way of dealing with the pain is to ignore it and divert my mind as much as possible i am giving up on my negative mantra of telling myself and others that i am suffering it is making the times where diversion works last longer and my ability to work through the pain better...when i am in agony and nothing helps i will simply tell them i have a migrane think they may remember that one i dont know why so many people have a block on this ...hopefully they will stop asking and i will be reminded of my tn less and less
I too grew up with a name as I have had essential tremor since I was a child, so I can totally relate to the feeling of being labeled, or as you so well put it being named . Thing is I have always been open about having TN. Partly, so I did not cut myself off from people who's help I needed. Also, in being open it has given me a window to be able to help others. As for the questions, as TN is a rare disorder, that not many have heard about, I love the opportunity to be able to educate people about it. Some will get it, others will not, such is life.
I'm in my 3rd year with ATN. My parents and my sisters know of the condition, but the rest of the family does not or only very vaguely (I don't really see much of my family, anyway). My close friends also know because we share things and feelings that are intimate to us, and I am very lucky that I have such understanding and supportive friends. When it all started I worked in a team of six people and they all knew because prior to my diagnosis I was taking a lot of time off to see different doctors, also, some of my colleagues saw me crying and they saw me after dental surgeries, so it was natural that they should know. I have since changed jobs, I got more used to my condition and am able to cope better, and I have stopped going to doctors, so my current collegues don't have any reason to suspect anything and nobody really notices my crooked smile (my facial muscles on the left side are in constant spasm due to ATN and TMJ dysfunction). My colleagues only ask me why I don't drink much at parties (my pain gets worse when I drink a lot and I'm on amytriptylene now, so I really have to watch that I don't drink more than a few glasses), but I avoid getting into explaining anything. I have realized that I don't like to discuss ATN any longer, because it somehow frustrates me to talk about it to people who don't experience it themselves. In my first year of this pain it was all different, though, as I had such a great need to talk about the pain and especially the emotional side of it - all the worries that I may become jobless, that I may never be able to kiss again, won't be able to finish university etc. etc. I kind of prefer to keep those worries to myself now whether that's good or not.
Thank you so much everyone for your thoughts and life experiences on this. Time will tell how it goes for me because I could go on for hours how the truth has worked against me the few times I've shared it, but eventually people will understand. Thanks again for your time. Best of Luck to everyone to get rid of this darn condition (-: