I use to have a giant problem of sharing to anyone at all about my everyday experience with pain. I felt it made me a victim, or as if I were looking for console and compassion. I always tried to be as tough as I could around everyone (in my own mind as I really was exceptionally flinchy and quick about retreating into my personal space). How have you guys managed socially with your symptoms? If someone asks why you are shying away, or if everyone wants to do an activity, or even the hardest part at work, do you guys share why or do you refrain from admitting the actual reason, which is now a part of you?
I have had to give in and just tell my friends and family. It feels better I guess, but I miss my privacy of mind.
I have told my closest friends and family about it, but with co-workers, people I don't know that well, I only mention it when it flares up (cool/cold moving air) and I say I have nerve damage across my face that causes pain attacks sometimes. Most people never ask me anything beyond that. When I was first diagnosed I explained too much about how severe it was and how it's been called 'the suicide disease'. All that did was cause gossip that I was a mental case. Never made that mistake again.
I'm the same. A couple of close friends know but don't really understand. My family is amazing. I guess I am "lucky" in that I am the fourth person in my family to have TN so they all know a lot about it and how painful it is.
I did run into some trouble with work last year. I had to take some days off and when I am starting or increasing my med I have a pretty hard time functioning for a couple of weeks. I didn't want to explain what was happening with the pain or the meds for fear that it could compromise my job. I grin and bear it when I am at work and keep it to myself.
I am a single mom and work two jobs so I don't have much time to social anyways and when I do I have a few close friends that I chum with. I sort of go into hiding sometimes. Just making it through work and the evening with my daughter is all I can handle. I don't put any pressure on myself when it comes to socializing. If I have to cancel I blame it on something else.
I grew up with a mom that was always sick. She has MS, TN and also had cancer ten years ago. I know all too well the hurdles and social problems that face people with invisible illnesses--from both angles. It is impossible for most people to understand what you are going through. The spoon theory is a good way to explain it, without explaining it! You need to have a thick skin and as I can see it--you really need to keep it to yourself. If you expect other people to understand and feel bad for you then you will be very disappointed. It is a very isolating thing to go through.
The cold air is the worst. Does anyone get sensory disturbances from light and sound? For me it mixes with pain into a jumble of adrenalin spikes due to my eye reacting to stimuli. I suppose keeping it to yourself around work is the best idea. It’s tough to grasp the whole concept in other people mind
When I first starting having bad lighting attacks light really bothered me, I had to put a towel over my head when riding in a car. It no longer bothers me and loud noises never have bothered me.
I have told employers, and I don't think it helped my cause. In fact, I am finding it best to just keep it to close family and friends. And even with family, I feel like they experience burnout, so at times, I if I can, I just keep it to myself. There's really no good answer to this. On one hand, it would be good to tell people, because the pain can strike at any time and it can be frightening. On the other, if you talk about it and the meds openly, I think people view you differently.
Yeah at work a couple of co workers would ask " how are you.... really ?" I almost felt it was quite derogatory in the tone they used, and I'm quite sure they thought I'd lost the plot. Now I too try to keep it to close friends and rellies . Sometimes I feel completely isolated and alone , don't want depression to take over but people have no idea what we cope with and even in remission you're constantly in fear of a relapse. But have to tell myself there are way worse people than me ... coping with a hang of a lot more than I .
It is sad that we have to hide this 'thing' from bosses and coworkers. I remember a co-worker broke his wrist and they took up a collection to send a 'gift pack' to his home, full of treats, dvds, cards, etc. I gritted my teeth when I gave my money and thought to myself how unfair it was that he was going to get well, not to mention all the concern and attention he got for having "real" pain while I had to hide mine like a leper or something. That was same job where psycho boss told me I was "too moody" because I'd be all chipper one day and then sullen and withdrawn the next and no one wanted to be around me. Finally got let go because after 6 years of working there they decided I wasn't a good "fit". I miss the money but not the people, especially my department, which was ironically HR!