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looking well makes me feel guilty

Oct 05, 2014 3:58 AM

I had a meeting yesterday at work regarding the way forward following an Occupational Health review I attended a few weeks ago.

My very good friend M came with me to the meeting and he participated in helping me make my points as at times my memory or speech goes out the window. The meeting with my two Directors and Store Manager went really well and after a very long arduous journey I believe we are all singing from the same song sheet.

Today I feel overwhelmed with emotion. The run up to the meeting was incredibly consuming as I had no idea what to expect and what way the outcome would go. So many scenario's were whizzing around my head. It is a massive relief to have the meeting over and done with, and I think that is why I feel so emotional.

The biggest emotion I feel now is guilt. M and I met in a local coffee shop only a few doors away from where I work so we could have a catch up and discuss all the possible ways the meeting would go. We sat outside as the weather was not too bad and besides, we both smoke. Not too long after we were sipping our coffee's my Store Manager walked past. I said hello and the response was "wow, you look really good, REALLY good. I expected you to be a bit brown, but not THAT brown". I took it as a compliment.

When meeting my two Dircetors they both asked how the holiday was and commented on how well I looked. The meeting started and I was asked how I was. I gave my answer, Nothing has changed and if anything some symptoms are worse.

At various times in the meeting I became very aware of how I looked and kept making comments about the way I look after my holiday betrays how I feel on the inside. My Directors and Store Manager never made me feel I had to justify how I look compared to how I feel, I just felt so guilty for not looking unwell.

Last night and today it has been playing on my mind. Various scenarios have played through my mind. I know, at the moment I look really well. I am tanned and after all the rest I have had I also come across as being relaxed, but inside I hurt. I am in pain and discomfort everyday. Why does the outside not convey what is happening on the inside?

I did feel really guilty, especially when leaving the meeting and chatting to all my colleagues who I have not seen for the last 3 months. Some of them looked confused and I could imagine what was going through their minds.... he looks great, so why is he off ill? To be fair to them, I would think the same way.

I am VERY fortunate to have colleagues who understand and are very supportive. I really felt their love yesterday and I was humbled by the reception they gave me. So kind and caring, it was totally overwhelming, especially as I have not seen them for such a long time. It was such a wonderful experience. I do feel fortunate and blessed to have colleagues like that.

Today, the sense of being cared for by my colleagues has not left me at all, however, it has compounded the sense of guilt for looking normal and healthy. I realise now that many people may look at me and think I am putting the illness on as I look well. Thankfully for me, my colleagues are not included in that group of people.

I am sure many of you have experienced that well known quizzical look when you first tell someone how unwell you are and you can see it in their face, "you look well so what are you going on about!"

It's a very difficult challenge to get my head around. Don't get me wrong, I am happy with the way I look, I am so pleased I do not look the way I feel. I am sure if I did look the way I feel I would have no choice but to wear a bag over my head much like Joseph Merrick (the elephant man) and I would only be allowed out after dark or on Halloween! It would just be a bit easier to look the way I feel and stop me from feeling guilty.

Don't get me wrong, this is not me thinking I look so good I am going to be the next cover front man for some major magazine, or so gorgeous I can endorse men's grooming products. This is not about vanity, it is the outside betraying the inside and the guilt associated with looking normal instead of unwell.

I often think, do other people feel the same way? Do other people feel guilty for not looking unwell? Do other people get fed up with the looks you get from people and you know they are thinking, just pull yourself together, we all get aches and pains!

Oct 05, 2014 9:06 AM

you said this so perfectly

Oct 05, 2014 4:15 PM

I know exactly where you are coming from, Peedee. I can feel so frustrated when I know I don't look in constant pain, and others really can't begin to understand. Only my 'nearest and dearest' know how I am feeling at any time, just by observing my body language; eyes; tone of voice; subtle facial expressions; even how I am talking.

I'm pretty sure that if I did look as bad as I feel, I would scare everybody off!

I use Christine Miserandino's Spoon Theory to explain to colleagues and friends about how my chronic pain affects me.

If you are unfamiliar with the theory, it suggests speaking about your day in terms of 'how much energy you have to begin the day, combined with how much pain you have; and your daily activities.

The spoons represent how much possible energy you start with at the beginning of the day, and utilising the spoons equate to the number of activities you can undertake (e.g. getting out of bed; getting showered; getting dressed etc), depending on how you are feeling when you wake. Once you've run out of spoons, you can do no more. The speed with which you use up your spoons, depends on your level of pain; how tired you are; if you've had a bad week etc.

It's worth viewing Christine Miserandino's theory at: painhttp://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Oct 05, 2014 4:16 PM

Sorry! Link is:

Oct 06, 2014 4:02 AM

Thank you lelpune, I will take a look. It is so difficult to express to people in a siple way just how you feel when your outside appearance betrays that. I hope this will help.

Oct 06, 2014 1:08 PM

Lelpune, wow, that is fantastic about the spoons. What an amazing way to describe how the illness works. I can really relate to it and will certainly be using it to explain how my days are to my family and friends. Thank you so much for the link.

Oct 06, 2014 11:31 PM

Worst was hearing from my workers comp doctor, the only person who could authorize my disability leave, that I looked great, when I felt like hell

Oct 07, 2014 4:44 AM

jjanecho, it is horrible when you have someone qualified like that who your employer will take notice off make a remark like that, as that is the only bit people will remember. It is horrible. I am trying to come to terms with the looking ok while feeling like ive been run over thing and it is difficult. The spoons thing that Lelpune put the web address in a previous response really helped me. I will be using it. Have you looked at it at all?

Oct 07, 2014 4:52 PM

Peedee - so pleased you found the Spoon Theory useful. It's a very simple explanation. Good luck!

Oct 10, 2014 8:48 AM

I have the same issue. I'm in constant pain, but yet I normally look like I feel great (until it's too much to handle which is usually in the evening when I'm not really around anyone). My bouncy personality some how manages to shine until pain has consumed every ounce of energy. I have chronic joint pain (caused by a list of problems) and I power through it until I can't go anymore, which makes people (including family) act like I'm fine and feel absolutely great even though on the inside I'm in agony. My Dr even takes the "you look great and must be responding to the medications well" stance even though I'm telling him in full honesty that I feel like I have been ran over and the meds are not working at all. It's extremely frustrating to feel so bad and people think that I'm full of it because I don't look 'sick' and sometimes even verbally doubt how I feel (a Dr was one of the few who have been ballsy enough to make such comments). In a way I feel like no one takes my problems seriously unless I look like I feel like total h*ll. It's definitely an emotional rollercoaster to know you feel horrible but look just the opposite.

Oct 12, 2014 9:21 PM

I know it is very frustrating! i constantly have people tell me how good I look when I'm always hurting. It makes me embarrassed to admit I'm hurting and I think people don't believe me. i had a 2nd lumbar foraminectomy in October 2013 and at one of my follow-up visits with my surgeon (about 2months after surgery) I told my surgeon about all of the pain & he said "well, you look great". I very sarcastically replied "well then let's just make decisions based on appearance". he didn't acknowledge my comment but he never said that to me again. Try not to let yourself feel guilt, others who have dealt with or been close to someone with chronic pain understand and people who know you don't doubt you.

Oct 12, 2014 9:31 PM

don't feel guilty... I have had chronic, worsening pain (level 8 ON meds) and people always ask how I am and when I tell them, I get the same thing. you look great... nobody would ever know you're so sick. I don't take it as a compliment, I take it as a dig. am I supposed to walk around crying and put myself in a wheelchair to be taken seriously?? you know, sad thing is, you never know. look at Robin Williams... he looked great, made us laugh and was so depressed he took his own life. people should think before they make that statement because many take it as being told that if they look good, they can't possibly be that sick.

Oct 13, 2014 12:28 PM

My mother is a hypochondriac and has Munchausen's Syndrome, and I'm so terrified that people will view me the same way if I make reference to how much pain I live with, or the cocktail of meds I'm on!
(even though she was never diagnosed with any physical condition - other than the Munchausen's, and I do at least have diagnoses!).
It is so hard for others to understand.

Oct 13, 2014 12:35 PM

I feel the same and I won't phone in sick to work, I'm sooo stubborn but I do have some good colleagues who actually know when I'm suffering, I thought I hid it very well. but I also work with one who is a cow and ridiculed the condition in front of me the other day, I am going to have a word with her! she should know better being registered nurses!!! pain is what the patient says it is!!!!

Oct 13, 2014 4:56 PM

Thank you, that is fantastic about the spoons! I never knew about that.
What I do I know is if I looked how I feel, it would scare others away...it scares me. I "try" to look nice but I'm miserable inside.
That's a fact, pain is what a patient says it is! We don't like hurting but unfortunately we do.

Oct 14, 2014 10:04 PM

looking well ....... is a disability in it self it gives us feelings of guilt which are usually a transference from others as we can all suffer from judgmentalism.
my daughter has CF but unlike 90% of people having this condition she looks normal however her lung are at present 55years older than her chronological age and guess what she get nothing but hassle because of her appearance generally from the retired generation however she is breathless after a few yards walking.. advice take each day as it comes and let the guilt wash away nobody in their right mind would want 10% of the pain we go through?

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