I think the hardest thing about this affliction is that people just don’t get it. I don’t look sick, I’m not in the hospital. How can there be anything wrong with me. It is so impossible to explain to my friends and coworkers and even my family how excruciating this pain is. I can’t call into work for fear my TN might act up. So instead I go to work and power through he attacks. Trying to talk as little as possible. I don’t know what else to do and I just don’t know how to explain it to people. Thank God for my boyfriend, even though he doesn’t understand my pain he is very sympathetic and caring. Does anyone have a good way to explain our disease to people? I want people to know why sometimes I just have to stop talking and why tears fill my eyes.
For friends and family I usual have them read the spoon theory. When I did work I did give my boss the info on TN. Only my coworkers that I was close to did I give them the names of my illnesses, the rest I didn’t say a word to or about my health issues. It’s none ya’s info for them to have. Though most of them excepted that and did not ask; they just knew I was ill.
Here are two links for friends and family…
http://www.livingwithtn.org/forum/topics/the-spoon-theory-link-repo…
AND
http://www.livingwithtn.org/forum/topics/an-important-reminder-for-…
: )
Hi Kylie. I surely do identify with your frustration in getting people to understand a debilitating disease that doesn’t have “visible evidence”. It’s like saying a person with “Crippling Anxiety” doesn’t really have it because they don’t use crutches! Or someone with “Paralyzingly Depression or PTSD” - unless they are in a wheelchair, it’s not “debilitating”! Sometimes when I’m home in bed suffering in excruciating pain, WHILE ON MY PAIN MEDS, if people saw me then, with my matted hair, lidocaine patches all over my face, heating pad over the patches, dark room, no sound, CANNOT EVEN TALK because just talking is a trigger for pain for me…well, maybe then they’d “get it”. But when I have to be out for Dr’s appts or RX pickups or my once a week prayer group - I make an effort to be “presentable”. But the EFFORT to look presentable takes hours! I have to shower, dry my hair, put on makeup, get dressed…all in STAGES. I have to rest every 15 minutes just to get myself ready to go outdoors in public! Takes hours. Nobody SEES that! They see the end result that we look pretty good to them! Never mind the drugs we have to take to even be sane and not in the fetal position in agonizing pain - mine is every day. Pajamas and bed almost every day is my life. How many people could deal with that? I had to retire from my teaching career. I could never even hold a part time job now. Most jobs require that one gets dressed! And that I be able to TALK! So, know that I so so understand what one goes through with this painful condition and that to the outside world we look pretty normal when they see us. Maybe explaining what it TAKES to do what you have to do each day - the EXTRA TIME AND EFFORT AND CHALLENGES…will help people understand. And maybe explain what it’s like WHEN THEY DON’T see you! How you are suffering so much and CAN’T BE “SEEN” or even get out of bed. I hope at least I’ve been able to assure you that you are not alone in your frustration that others don’t understand the nature of this condition and the SEVERE limits and challenges it places on us, both mentally and physically. Or what a diagnosis of incurable chronic pain does to a person’s mental state. Or how all these toxic drugs we HAVE NO CHOICE but to take just to try to limit the severity of our pain leaves us in fear of organ damage or other unknown effects. Or how depressing it is to have all the liberties and choices everyone else enjoys RIPPED from your life. That just getting dressed is a huge victory to us. And that we do these things IN PAIN MOST ALL THE TIME. I think we are so strong really because we trudge on forward with this huge burden on our backs every day. Let’s pat ourselves on the back more often. I think alot of people would crumple under the weight we carry around on our shoulders every single day. So, kudos to us!!
Oh, Kylie, I forgot to add, if ER Drs don’t “get it”, and after we pay giant copays and wait hours in excruciating pain, just to get relief in a CRISIS pain episode, and they DON’T/WON’T LISTEN TO THE PATIENT and instead give weak or ineffective pain meds in minimum doses, causing NO RELIEF AT ALL and desperate patient leaving the ER hysterically crying in pain after all those hours of waiting and NO INTEREST OR UNDERSTANDING BY A DR of this kind of pain - not to mention what an HERCULEAN EFFORT it takes to get dressed and get oneself to the ER and wait wait wait in unbearable pain - only to leave in as much pain as one arrived with, well, how the heck can normal people “get it”!!!
I honestly believe it’s because TN is so awful, so unpredictable and so painful, so called ordinary folk just cannot imagine, (sigh).
You have said here what I have been trying to verbalize for 5 years.
I have lost my friends because it is so hard to leave the house Then have to talk to them for a period of time.
The only job I can get is babysitting and when I have to read to them it is torture.
The so unpredictable thing is trying for everyone...friends and family as well as us. I try never to make plans more than a couple of days out and even then am not sure how I'll be doing that day. We end up coming across as "flakey" and I don't blame people for feeling that way. It takes a lot of effort to be supportive of a TN sufferer. That being said, the "SPOON THEORY" that is posted on here is perfect to share with those close to us to help understand. I gave it to a co-worker shortly after she was diagnosed with Lupus and she immediately identified and gave it to her daughter. It sheds some light into our world.
Jackie said:
I honestly believe it's because TN is so awful, so unpredictable and so painful, so called ordinary folk just cannot imagine, (sigh).
I truly thank God for this site because here and only here do people truly understand how I feel. It also puts the degree of my illness into perspective because so many of you have it much worse then I do. I’m certain that without this site I would truly lose my mind! Just last night I went to a concert that I had been looking forward to for months, and I could barely enjoy it. My two year old son suffers all of the time because of me. The scariest thing to me is that it’s only going to get worse. Ugh!! I pray for all of you as I pray for myself. Thank you for being here for me.