firstly I am new to this page but I would like to hear your advice. Since TN is in the face it becomes often very difficult to smile or look relaxed when in pain. It also makes you physically and mentally tired to fight against the pain daily. Some days it is easier to hide, but often it is not.
As a teacher I try to see my classroom as a theatre. The door opens (the curtains open) and I smile. But in break time I am physically so exhausted sometimes and also want to give my face a break. So I don't smile. But work colleagues are less understanding along with this. They assume that I am grumpy or unmotivated. They assume I am the same in the classroom and see this as not professional. I am constantly busy proofing that this is not the point.
Also socially it had a great impact. Our friends think I am a fun spoiler if I sit quietly and not smiling at a braai. Friendships and invitations became less. I tried to inform them, or educate them. But you know... humans only want to see the easy explanations.
My family life suffered the same. My children think I am an angry person because of my face expression and the tiredness and my husband sometimes too, even though he is rather very understanding most of the time. But I can understand that they wish I would be the same like before and be more happier.
I am happy, also love my work, I am still studying and enjoy every bit, I love time with my children and love to socialize but just cannot show it anymore as before. The misunderstandings and the social loneliness are difficult to handle for me and even though I fight every day against it I realise that I am getting more and more tired of being tired.
How do you cope? I would like to hear your ideas, stories and experiences.
Have you talked to your coworkers? What was the outcome?
As for coping, I have been fairly open and honest with all my contacts, be it professors, classmates, etc. I'm also not a very social person to begin with.
Not being able to smile much was a hard one for me because I used to be a person that smiles a lot and wears this happy expression on her face most of the time (I genuinely was happy prior to ATN, anyway). My male colleagues would sometimes complain about my tired/unhappy expression, but my female colleagues were ok with it and told me to relax and not to worry. I wasn't social at all the first year of my ATN and it was very hard to explain that I wasn't up to any social activities, I know I made some people upset but I guess it was their problem more than it was mine. And I hated when people kept asking me when I'm going to get better. I am actually doing better now, and a majority of my current colleagues do not even know that I have ATN. There are physical signs but I don't think people notice them as long as I look "moderately happy". I go out more now so people don't blame me of being unsocial, although they do ask why I don't drink much. When I'm tired, I excuse myself and sometimes I need to take a day off and just spend it in the bed because of my low energy. Luckily for me, my boss is one of the few who knows. Also, my daily pain (which I cope with ok) is usually between 2-3 on the 0-10 pain scale, but I know when it reaches above that I can look and behave a bit grumpier and when it stays on higher levels over a few days or even weeks I cope a lot worse.
I talked to my co workers and boss but you know if it is the unknown. They mostly are so busy they don’t want to understand it seems. Even my boss. He told me that I should do some sport exercises with the sports teacher for my face muscels to smile more after watching me in one break. He didn’t mean bad but it showed me he also didn’t read the info I gave him and doesn’t take it seriously - while co workers with arthritis, allergies or migraine at least get the minimum of support.
I jyst realised how important the fact of a smile and open friendly face is part of good communication. If this is missing a lot of misinterpreted and misunderstood situation happen. It is not easy to overlook the fact that this has nothing to do with the character or basic mood of the person himself.
A lot of friends just cannot overlook this. So they don’t know how to put this into their cognitive learned box and therefore make the wrong assumption. Just makes you feel like an outsider, allone, misunderstood and angry. Because to proof that you are still motivated to work and give quality of work should not be based on if you drink your tea with a smile.
I so understand, a problem people cant see they can't grasp, with that said my hubby became disabled 4 years ago, lost a leg, in kidney failure and in wheelchair, you can see that and still friends have disappeared, add my TN to it and whoosh, talk about alone! I am social and want that, but yes it is hard to commit to anything not knowing what kind of day I will have. I appluad you for continuing to work and I wish I had magical words, one cliche I say to myself a lot is "what other people think of you is none of your business" :) You can do your best to educate people on TN, but only those that want to hear and understand will, the others, exactly it is their problem. You are obviously very strong and as far as coping, I do a lot of the time, just by my desire to live and continue to show my dogs and train and of course, I am the caretaker of my hubby, I just can't let TN take my life, yes on those awful days it is tough to keep on, lack of understanding is tough, anger, yes have issues with it, but the best you can do is be good to you. For me gardening and my pets are my escape, where I find peace. Take care of you, first and foremost. And know we are all here for you and sure understand. I recently joined a new church that is bringing friends that understand, it was a huge step to take because between TN and my hubby being in hospital for years before coming home I did not get out there, it was simply home or hospital, but finding people that love and understand helps, reaching out often helps. This group is a huge help, always! Keep in close touch with your Dr's and keep trying, sometimes finding the right Dr is the hardest part, but there is life with TN, I have had to learn that, it is a process. Thinking of you and praying for you, Gentle Hugs,
Thank you Betsy. These were such supporting words. Thanx
Betsy Carlson said:
I so understand, a problem people cant see they can't grasp, with that said my hubby became disabled 4 years ago, lost a leg, in kidney failure and in wheelchair, you can see that and still friends have disappeared, add my TN to it and whoosh, talk about alone! I am social and want that, but yes it is hard to commit to anything not knowing what kind of day I will have. I appluad you for continuing to work and I wish I had magical words, one cliche I say to myself a lot is "what other people think of you is none of your business" :) You can do your best to educate people on TN, but only those that want to hear and understand will, the others, exactly it is their problem. You are obviously very strong and as far as coping, I do a lot of the time, just by my desire to live and continue to show my dogs and train and of course, I am the caretaker of my hubby, I just can't let TN take my life, yes on those awful days it is tough to keep on, lack of understanding is tough, anger, yes have issues with it, but the best you can do is be good to you. For me gardening and my pets are my escape, where I find peace. Take care of you, first and foremost. And know we are all here for you and sure understand. I recently joined a new church that is bringing friends that understand, it was a huge step to take because between TN and my hubby being in hospital for years before coming home I did not get out there, it was simply home or hospital, but finding people that love and understand helps, reaching out often helps. This group is a huge help, always! Keep in close touch with your Dr's and keep trying, sometimes finding the right Dr is the hardest part, but there is life with TN, I have had to learn that, it is a process. Thinking of you and praying for you, Gentle Hugs,