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I’ve just discovered your website, Christine. The latest input looks like from a year ago, but it doesn’t matter. Having chronic pain/ illness hasn’t changed. I suffer with chronic migraine and spinal osteo-arthritis. Your article, ‘Pay No Attention To The Girl Behind The Smile’ really hit home for me. Thank you.

Relationship expantations. They understand. But, you alway in up explaining again. Why you can’t go. But, they get it. Except lets make her feel guilty for saying no. I can’t put myself first? Also, I have 3 young men on the autistic spectrum. I’m tired of it.

I relate to what you say, Natalie. I’ve also moved to the outskirts of a new city and find it exhausting to make new friends. I’m often cancelling last minute, the last time I cancelled my plane flight to go with my daughter somewhere marvellous, I know she was upset to fly alone, she kissed me goodbye and said: “Tomorrow you’ll be flagellating yourself for not having come with me”. I don’t think I’ll ever forget those words. ¿How can I punish myself the day after having felt nausea, vomiting, bad headache, barely being able to walk, etc.? ¿How does one get on a plane like that? Maybe on a stretcher…? In the end I was not too sad about not going, I relaxed and did some things I’d been putting off, I didn’t feel pressured every day. Thank you, and of course Cristine for writing all this. Hugs.

This perfectly describes how I feel most of the time. Everyone says I’m a great actor or they don’t even know I’m acting. I recently moved to a new city and I just do not have the energy to make new friends. It is so hard to keep the act up and people just don’t understand when I cancel last minute. I want nothing more than to be normal and plan to hang out but I just can’t count on my body. It’s really nice to read that I am not alone. I have felt alone in this for far too long. Thank you for writing this.

while my illness is mental rather than physical, i too have always been ‘the girl behind the smile.’ i make people laugh, people want to be my friend, but then i back off. how can i allow someone to enter my life, knowing that they will eventually see the Real me- depressed, anxious, scared to death of life, even though i also love it? you describe this double-life so beautifully. i love your writing. keep up the great work, and please know that This person, for one, Really likes the girl behind the smile- You!

Thankyou for writing this. For a long time I have felt like this but have been unable to get the words down for fear of breaking in two. I have asked my friends to read this now before they ask again how I’m doing as I hope it will change the tone in some of their voices or the look on some faces . If not they can leave and not come back . Thankyou so much for putting words to my life. Xxx

My name is Christine, I have lupus in addition to a few other autoimmune disorders. This post has me in tears, as if it is me writing this. It’s only been about 5 months since my first autoimmune diagnosis, 3 since lupus. My therapist lead me to your site. Thank you for your truth, honesty, and strength. This post is me to a tee, and however much it sucks, there is comfort in knowing i’m not the only one feeling these things. Thank you for sharing your story!

I feel you Ann..endo was my first in several pain causing diagnoses…I’d say endo pain is a totally differebt beast from PMS and just cramps!

Yes. As somebody who lives with three invisible chronic illnesses, I nodded again and again as I read this–over the shared feelings about illness and how others react, the understanding I feel about having knowledge I wish I didn’t, and the “Oh!” [with pointed look] when others first learn of my illnesses and pain. However, as somebody who suffers from endometriosis and premenstrual dysphoric disorder, I was stopped cold by your comment about those who complain of “PMS cramps.” For the 1 in 10 women who suffer from endo know, PMS and cramps can be debilitating. They stop our lives in its tracks. And there is no cure, only band-aids and bad treatments. Please, let us be included as those who can understand your powerful blog post, rather than marginalizing us in the same way our doctors, families, and friends do: by insisting that PMS and menstrual pain are only in our heads.

Oh how i can relate to this

Thanks for the article. I can relate to all of it but one part where you say you want people to love you because you are a great person. I strongly agree with that. My illness as you know has it’s ups and downs. Well last year I had lost so much weight I was at 117lb, which was not good for my body frame. I was underweight, my doctors (GI and Rhumatologist) worked hard to make me gain my weight back, and nothing was working, I couldn’t keep ANYTHING down. I would see myself in the mirror, all I could see were bones, I had no color, my eyes were sunk in. I looked like I should of been in a horror film.
Well, I didn’t leave my house much, but when I had to, I would go to the store, and I would see people, people who knew me before I had got sick, people who knew the real me. I mean even after I was diagnosed, they knew what I had. Well, I remember walking into the store and people staring at me, I felt uncomfortable but i didn’t let it get to me. All I could do was hide my pain thru a smile. So I’m walking around the store, and I see “friends” (or so I thought) that went up to me and gave me a hug. As they hugged me, they started to cry, saying, I’m sorry, I feel bad, look at you, you look sick. And in my mind, all I kept thinking was, wait, look at me, look at the person I am, look at the person, I was before I had Lupus, I’m still the same person, I’m still the same, loving funny person you know. I’m still in here. And as time went by, I noticed that people were hugging and talking to Lorraine with the illness, not the real me. I did get upset. I wanted people to talk to me, not the disease. I was still the same, I mean, I know there was damage going on, but it was still me.
The reason I say that also is because I had a friend who passed away from breast cancer, but when she was alive, people would do the same thing, hugs and kisses because she was sick. I would go up to her and I was seeing her for who she was, not what she had. And it made her feel comfortable. And that’s all people with illness want, is to be treated for who they are, not feel sorry for them for what they have. I apologize for writing a novel here, but seriously people need to understand, we’re still the same people. We have to change our life style, we don’t change who we are. We accept what we have, and so should you. I accept all the love, hugs, kisses that people wanna give me, but don’t cry over me like I’m already dead, or feel sorry for me for what I have. Just accept me for who I am, I’m still here, the same person you’ve known for years.

I really appreciated reading this. Thank you! I have been dealing with an invisible illness for years, and have only finally started getting answers in the last year. Thankfully I believe I can be cured, and now getting the right bloodwork has revealed what I need to start getting better. But it’s been a long, hard road.

People who remember me as healthy think I’ve just become lazy and unorganized. They don’t understand that there’s a medical reason for why I have less energy now. I’ve frequently been told that I don’t look sick enough. One coworker even told me that because my illness isn’t easily recognized, I should just suck it up and get used to not being believed. That hurt a lot. Now some coworkers won’t even look me in the eye because they think I’m a loser – people I’ve worked with for many, many years. It’s demeaning and dehumanizing to be treated this way, not to mention depressing. My doctor has been great (although I went through a lot of not-so-great ones to find her), and she is researching all the time and suggesting new approaches. I tried to be strong and downplay my illness for years, but now I’m in a situation where even talking about it makes me break down and cry.

Probably the worst thing is that my boss deliberately overloaded me with work this year so I could “prove” that I could still do it and gain back the respect of my coworkers. She did it with good intentions, and being a very energetic person it made sense to her, but it backfired badly. I’m looking for a new job right now, because I know I deserve something better. I’m still very capable of working in the right position, and have lots of qualifications and experience, but deliberate stress and unsupportive coworkers and not welcome in my life anymore.

Thank you, Christine! I’ve been coping with chronic illness for 15 years (in my case, MS) and I have many, if not most of, the same sentiments, and similar difficulty trying to explain my reality to the healthy folks around me. Seeing someone else articulate it so concisely is incredibly heartening. I appreciate your words immensely. Here’s hoping you wake up tomorrow with lots of spoons!

sorry if it’d offended you~ great article Ms.C

Your article touched me very much. I have been very ill the last two years, losing my job in the process. My life basically came to a halt, i lost my driving privileges. I have had several tests It could be so many things because of the symptoms but the tests all come back neg I try to put on a brave front but I am getting so tired my friend! I have had some progress but then again it seems we slide back and the pills!!! So I understand you and pray for you Miss Christine!

Christine, My name is Glenda Eakle. I just read this and wrote the comment below. I was going to share this article with my support group and then saw that maybe I would be infringing on your copyrights? I’m not sure if that applies only to the “Spoon Theory?” I will not share it if it’s not allright with you. Please let me know through my email. Thank you so much.

So beautifully written, hits the nail on the head. I feel that this is how most chronic pain people / people with invisible disabilities feel. When I’m in a ‘flair’ (which is usually every day) all I want to do is hide in bed so no one can see the tears. Rich, from the wonderful world of RSD. 6yrs. & counting.

amen! perfectly said . when im really sick it helps a lot to read your posts i love them 🙂 it reminds me im not alone .thank you so much!

My mother staged an intervention for “whatever I was on” and convinced my doctor I was bipolar.
I’m not one to be dramatic with my health issues and look for pity; I don’t openly advertise I’m not well or exploit my disease. If I was having a bad day and not feeling well I’d stay home and rest. During a long “flare”, I wouldn’t function… When I was having a “good” day I’d do the best I could, do my best to function normally…
There was no understanding because of all the “good” days my family could base how I “am” off of and justify my alleged addictions. Do you know how many symptoms of autoimmune diseases are mimicked by symptoms of severe drug use and alcoholism?
I’d tell her “no, mom, I can’t come over today. I have the runs and have to stay near a toilet, I’d probably not even be able to make it to the car let alone your house” and she’d tell me it’s from drinking, I hadn’t had anything to drink in weeks. It was my IBS. When I couldn’t breath because I was having an excruciating “hug”, costochondritis, that was debilitating and painful as a heart attack she’d conjecture something for that as well, I couldn’t answer the phone because I was in so much disabling pain I couldn’t take a breath to speak… clearly I was on something.
Of course I was depressed; I was alone with my sickness, it was affecting my personal, family and social life. The lemon juice in the cut, however, is it’s a genetic thing. My grandma had it, my mother has a variation, as do I. My sister is now developing symptoms as well.
I no longer talk to my family because of willful ignorance towards each other and I was forced to change doctors to get quality care.
I still put my best face forward and I still don’t exploit my condition and over dramatize my pain and symptoms but now I let people know exactly what is going on and why… I’ve told people that they don’t actually know me if they did, they’d understand what I am going through. I inform them if I seem normal it’s because of my meds; one for concentration and chronic fatigue, something for depression and my gabapentin for nerve pa… it goes on.
Even now my landlord who has lupus and fybromialgia says to me “you don’t act like your sick”, well, honey, neither do you…

Ever feel like, when someone shows up, you’re instantly “on”? I do that, like a good receptionist, or an actor in an interview, whenever anyone is there, and sometimes, even docs. Only my cat knows for sure.