Pulmonary Hypertension News Forums Forums Life Challenges Mental Health How Do You Feel About Having Your Picture Taken?

  • How Do You Feel About Having Your Picture Taken?

    Posted by Colleen on May 3, 2022 at 7:31 pm

    Do you smile big for the camera or run from it because PH makes you feel self-conscious about how you look?

    My son Cullen cringes at pictures of himself prior to his transplant because he looked so unwell and thin. He refers to them as his skeleton pictures.

    As a caregiver, I’m starting to shy away from the camera even though pictures have always meant so much to me. I think I look haggard and hate seeing myself like that.

    Can you relate to how Cullen and I feel?

    jen-cueva replied 1 year, 10 months ago 7 Members · 32 Replies
  • 32 Replies
  • jen-cueva

    Member
    May 4, 2022 at 3:21 pm

    Hi @colleensteele, you certainly don’t look haggard; you always look beautiful in pictures. Like you, I love pictures, but not being in that, LOL.

    KK, my daughter, is the picture Queen. Even Manny takes more pics than I do. I often look at and criticize my pics. Like Cullen, the ones where I was worse and skinnier, I feel look frail and sick. I only like to take pics when I feel good, dressed, and then still “picky,” as my family says.

    For me, this was even before PH. But I have noticed that I tend to be worse about this after my PH diagnosis and my body going through so much.

    Does Cullen enjoy or accept having his picture taken better bow post-transplant?

  • kathleen-grady

    Member
    May 5, 2022 at 3:01 pm

    first you do not look haggard, your pictures are always beautiful and fun to see how happy you look.

    I do love to have my picture taken, I am always making everyone take pictures with me. Just grateful to be alive and reasonably healthy. 😀

    • jen-cueva

      Member
      May 6, 2022 at 10:19 am

      Hi @kgrady69, I love your thoughts about photos. Like you and Colleen, I love having and looking at pictures. But, usually, I don’t like how I look in them.

      It took me months to get a new picture for work because of this struggle. But once I take several or more, I usually find one that I am OK with. Do you or @colleensteele do this, too?

      My daughter has always loved taking pics and having her picture taken since she was young. We bought her so many cameras as she was growing up. She also enjoys and still does posing for pictures. But hers always come out good. Maybe it’s like others things; the more we do it, the better we become, including accepting what we think are our flaws. Thoughts?

  • Colleen

    Member
    May 5, 2022 at 4:55 pm

    @jenc Cullen is a little more agreeable to having his picture taken now but rarely if they are medical related. Even though he doesn’t like certain picture from his PH days or during his transplant recovery, I think he is grateful to have them. So, that’s something for you to think about. I just agree that I don’t share any of them without his permission.

    Thank you and @kgrady69 for your kind words about how I look in pictures. I really wasn’t fishing for a compliment. If it’s not my weight then it’s how tired I think I look in most recent pictures of me. But, I really do love pictures. They mean so much to me and I realize I can’t nag others to let me take their picture and not include myself in any.

    It seems that how we see ourselves in pictures and what others see are night and day to each other anyway, so might as well just go ahead and let the picture be taken.

    Kathleen I am the same way. I will go out with friends or family and they know that I will eventually ask for a group picture. LOL!

    • jen-cueva

      Member
      May 6, 2022 at 10:28 am

      Hi @colleensteele, like Cullen, I’m grateful to have pictures of others to look back at.Thanks to you and Kathleen for sharing the perspective of being grateful to have them and be alive.

      I need to start taking more opportunities to be in the pics not removing myself when others want pics. Like you, I, too, want and enjoy group pics, but I’m usually the one volunteering to take those.

      Colleen, I believe that we all think we are either overweight, underweight, tired, or too sickly for pics at times. You’re not alone. But you do look nice and beautiful in all the pics I see and on our video calls.

      You’re right; we see ourselves much differently than others in photos. Let’s try and be in more pictures and remind ourselves that we and others will be grateful to have those later to look back on.

  • carol-volckmann

    Member
    May 10, 2022 at 6:59 pm

    Kathleen I really admire what you said, you smile and have pictures of yourself. You are just happy to be here and alive!!!

    I shy away from having my picture taken. Scleroderma causes capillaries to break out all over my face and I am self conscious about the way I look now. I also feel tired and haggard especially late in the afternoon. I have tried concealing makeup but it does not work very well.

    I do realize in my head what I see in a mirror is NOT what others see – they are seeing the whole person. I need to remember your words Kathleen and see that I am here and that I am ALIVE!

    Great topic. Important for all of us.

    • Colleen

      Member
      May 11, 2022 at 4:04 pm

      @cdvol3gmail-com it is true, people just want a reminder of their loved one. Think about it, have you ever looked at a picture of someone you love and thought, “They look awful!”. I’m willing to bet you haven’t.

      I thought I would point out something else I have noticed. When I go back and look at picture of myself taken years ago I enjoy them more than when they were taken. I feel less judgy about my former self than the current me. I’m willing to bet that a few years from now I will look back on pictures from 2022 and enjoy seeing them. Anyone else feel this way?

  • jen-cueva

    Member
    May 11, 2022 at 12:57 pm

    Hi @cdvol3gmail-com, I, too, tend to shy away from the camera. When my daughter, KK, is around, she enjoys videos and pictures no matter what I think I look like. She says we are all beautiful and the hardest on ourselves. Plus, she says we must start loving ourselves and everything about us. We all have flaws, but flaws and scars define us and make us beautiful.

    Maybe some more men can share their views. Cullen’s views were shared in Collen’s column. How about you, @ripple76, do you like having your picture taken?

    This is undoubtedly an important topic that we all can work on. I’m enjoying reading the stories.

    • Colleen

      Member
      May 11, 2022 at 3:59 pm

      Here is a link to the column “Don’t Picture My Son With PH“.

      I would also like to hear how the men in our forums feel about having their picture taken. Is there anything that bothers you about it?

      • carol-volckmann

        Member
        May 11, 2022 at 6:32 pm

        Just read “Don’t picture my son with PH”. Beautifully expressed, beautifully written. Thank you and Cullen for sharing. ❤

      • jen-cueva

        Member
        May 12, 2022 at 3:10 pm

        Oh, what a lovely piece, @colleensteele! You do such a fantastic job writing about the experiences that you and Cullen have been through and continue to push through. You have such a way with words. I always picture in my mind what I’m reading about.

        Maybe that’s why pictures are so important. They do tell a story. But like Cullen., some images of my worst hospital stay and at my lowest are the ones I prefer not to look through. It reminds me of traumatic times. However, after reading and discussing this topic, I think I should remind myself how far I’ve come and be proud and grateful when I look through those.

        Thank you for sharing your beautiful family with us all. Many will benefit and relate to your pieces.

  • jill-upshaw

    Member
    May 12, 2022 at 2:26 pm

    Very real question. I grew up having my picture taken all the time and people asking me to run for this and that. I did not really like any of it. As I got older, I liked pictures even less. But now that I am sick, I take more pictures. I have lost a lot of weight and my color is always bad. When I take pictures, I can compare them to see what changes are taking place. That is the nurse in me trying to see if I can pick up on anything that needs attention.

    BUT, the other reason is keeping up with what family I have left. I have not seen my brother in 3 years and I have not seen my sister in 10 years. They don’t travel and are older than me. I send pictures to my sister-in-law and say “this is me today”. I will see my brother and sister-in-law soon I hope and I don’t want to see the shock on their faces when they see me. I look quite different. Nothing like warning them……

    Anyway, pictures are supposed to be fun but they do have other purposes too….

    • jen-cueva

      Member
      May 12, 2022 at 3:15 pm

      Hi @upshtcx, an excellent take on why you now take more pictures. If not, for yourself to see if you notice anything new for your loved ones.

      That is important, and I take pics with my phone every few months to send to my mom. She texts my sister and me now and then and asks for an iPhone pic. I usually tell her that I haven’t changed, and she would still recognize me. Hehe

      • Colleen

        Member
        May 13, 2022 at 12:42 pm

        @jenc I am about to turn into your mom! I’m laughing because prior to reading your comment I was thinking about how I hope Aidan will send me pictures often when he moves to Louisiana. He is so picky about what pictures he likes of himself so it’s hard to get him to have one taken let alone share it. That boy better keep his mom updated with pictures!

      • jen-cueva

        Member
        May 16, 2022 at 11:18 am

        Do it, @colleensteele- it’s funny that my mom is so random about it. Of course, I’m 2 hours earlier than she and my sisters, so thankfully, none at 5 AM yet! But once my younger sis texted back, she was in her PJs and hair on her head; mom said, so, I love you like that, too. She only thought mom would let her slide, LOL.

        Yes, Aidan better keeps his mom updated with FaceTimes and pics; otherwise, let’s get our Matt to go after him. He lives on the bayou in lA.

  • kygon

    Member
    May 12, 2022 at 4:14 pm

    This is a great conversation and @colleen and your “Don’t picture my son with PH was beautiful and made me cry a little.

    On this topic, I must say I am a sucker for pictures! Not only are they memories, so precious for family members and just priceless in general, but (and this is so silly) they can remind us that no one is perfect but Perfectly Imperfect… My daughter was struggling with self esteem and we started what we called Bad selfie wars.. Trying to see who could make the worst faces, or have the worst morning hair, and oddly it helped! I think because it helped her learn to Laugh at the Really bad days, she started naming the ache on her face feel better about herself in general … and it spread .. all the kids started doing it! My husband and I cannot leave a phone on a counter because we will be left with 25-30  just AWEFUL selfies, And my daughter upped the anti and made one my screen saver, so my screen saver is a double chinned, crossed eyed, flared nose picture of a Beautiful girl.. AND I LOVE IT! LOL

    I admit that as I age I get a little too aware of those pesky lines on my face, but it really just means I have had That many smiles on my face. (besides I will win the next bad selfie war) I really have no intention of stopping the selfie/picture craze even though my husband rolls his eyes at me quite often for my picture obsession….tee hee

    • jen-cueva

      Member
      May 13, 2022 at 10:41 am

      Hi @kygon, your share about the bad selfie wars is an interesting take. I love that you mention it shows we are all perfectly imperfect. That’s how I often describe myself, and it’s true.

      Laughter does help us get through the most challenging times. So, I can understand how the bad selfie wars helped your daughter build her self-esteem—laughing as I read your response and pictured those funny bad selfie shots. Too amusing that she saved one as your phone screen saver. My daughter loved taking pictures as a kid and still as a young adult. Like you and Bryan, if we left our phone unattended too long, we came back with many KK shots, mostly making goofy faces.

      I can imagine that screensaver is now one of your favorite treasures. How precious!

      Like you, I love looking through old pictures, and I’m one of my sisters who ask for all pics. Some of my greatest treasures are old pictures of my parents and grandparents, and my daughter, of course.

      It sounds like your daughter’s picture craze rolled over to you; those bad selfie moments continue, it sounds like. Bryan says like Manny rolling his eyes hehe.

    • Colleen

      Member
      May 13, 2022 at 12:57 pm

      @kygon it’s amazing how just reading something can change your mood for the day. Hearing about your “bad selfie” war with your kids changed my morning from tired to giddy. Too funny and I love it!

      Remember when everyone was taking pictures of themselves getting their first Covid shot and posting them to social media? When Cullen and I went to get ours I took a picture of him even though he adamantly told me not to.

      I didn’t realize until I looked at the picture back in the car that in order to keep me from sharing it he made a face and stuck a certain finger up in the air. Guess what, it’s one of my favorite pictures of him because I crack up laughing every time I look at it! He’s such a stinker, lol!

      • jen-cueva

        Member
        May 16, 2022 at 11:15 am

        Hehe, @colleensteele, I love Cullen a bit more after reading this one! Although, it sounds like something Manny would do to me, LOL

        Isn’t it funny that sometimes the worst pics turn out to be the funny ones that make our faves?

  • jill-upshaw

    Member
    May 12, 2022 at 4:16 pm

    I am the youngest and they always expect me to be bouncing and energetic. Well, that part left a while back for sure……I hate those looks when people are surprised….

    • jen-cueva

      Member
      May 13, 2022 at 10:46 am

      LOL @upshtcx, you sound like my baby sis. But thankfully, she’s healthy, just overworked, and continues to carry a ton of stress on her shoulders. I often feel like I should be looking and acting younger, but unfortunately, PH and my other health issues affect our energy levels and often our looks. I don’t wear a lot of makeup but no concealer I’ve found can hide the lines under my eyes. I call anything related to illness, battle scars which make us all perfectly imperfect as @kygon reminds us.

      What an excellent conversation starter, @colleensteele by sharing your open and emotional column.

    • Colleen

      Member
      May 13, 2022 at 1:04 pm

      @upshtcx it makes me sad that you feel like people are reacting to changes in you. Whether you have PH or not, people change in person and in pictures. If fiends and family are really reacting to the changes in you then they need a reality check because I’m sure they have gone through a metamorphosis too!

      • jill-upshaw

        Member
        May 13, 2022 at 1:16 pm

        Colleen, Thank you and I agree. I really have gotten some reactions. My sister is much older than me and sick. My brother and sister-in-law are really good people and they care about me. They are in their mid to up 70’s and my brother is battling a lot of health issues also. They just don’t realize how sick I am. Other people get no pass at all…….Funny how people see the changes in others but not as much when it comes to them…

  • tracey

    Member
    May 18, 2022 at 5:07 pm

    I hate it. When I see a camera I roll up my oxygen tubing, pick up the concentrator and run as far as I can. That’s normally about 3ft but people get the idea then.

    • jen-cueva

      Member
      May 19, 2022 at 12:45 pm

      LOL, @traceyaustralianmigration-co-za, you made me crack up! But I’m sorry that you hate having your picture taken. Have you always been camera shy, or did that change after PH and using oxygen?

      Why do you think you hate it so much? I bet your adopted kiddos would love to have many photos of you and them together and you with the boys. You’re a lovely woman.

    • Colleen

      Member
      May 20, 2022 at 7:12 pm

      @traceyaustralianmigration-co-za you know I care about your feelings but when I read “That’s normally about 3ft but people get the idea then,” I cracked up laughing. Who needs pictures when you have a memorable sense of humor?

  • tracey

    Member
    May 20, 2022 at 4:25 pm

    @jenc, it’s not so much a PH thing as a lupus thing.  Once upon a time, a long, long time ago I was (and I’m trying to say this with humility ????????) a bit of a looker. I always think back to my South African equivalent of prom, where I wore a body hugging, full length, silk, red dress. The DJ played Lady in Red about a dozen times and I was crowned the equivalent of prom queen.  My date almost swallowed his tongue when he saw me ????. You get the idea. That dress fitted me for about another 10 years and always turned heads.  My partner, and soul mate, during that time came from a big Greek family so we literally had a wedding to attend every weekend for about 5 years – we were in a lot of photos. I was so in love, had a sleek body and felt pretty darn glamorous (even though I’m a jeans and tshirt girl at heart).

    Then along came lupus with a vengeance. At that time the only treatment was cortisone and I was so over the edge that I was getting 1g IV at least three times a week for over a year. It started off with the classic moon face but in a very short space of time I went from being compared to Grace Kelly to being the Michelin man. I hated the way I looked. And then Peter and I had a very messy break up and I was devastated for years. I was being bombarded with all sorts of experimental drugs that sent me into menopause at the age of 34, and even though the meds have progressed, none of them have been weight friendly. And then there are all the body shaming doctors who tell me to JUST lose some weight.

    I am nowhere near being a candidate for the TV program My 600lb Life, but I’ve been made to feel that way. I’m pretty sure my doctors think all I do is sit around and eat fast food. The irony is that the closest fast food joint is at least an hours drive away, so I really only eat home cooked, whole, unprocessed foods. I can tell they don’t believe me when I tell them this.

    Anyway thats a very round about way of explaining why I hate having my five chins photographed ????. Hannah and Marco have managed to sneak in some photos from time to time, but I very smartly put a stop to their idea for a professional shoot.

    I’m happy with looking at their photos and the three gazillion photos of my doggos, I don’t need to look at my mug.

    • carol-volckmann

      Member
      May 20, 2022 at 6:29 pm

      Tracy, my heart really goes out to you. Dealing with PH and Lupus is a triple whammy. Lupus alone is bad enough and do a number on your physical looks as well as your organs – on top of that the drugs that are supposed to help fight against the effects of Lupus and drugs for PH can and do cause a whole new set of side effects that can be pure hell.

      My PAH was caused by Scleroderma which have invaded my body with a vengeance inside my body and my outward appearance. Try as I do and use makeup, I get tired of trying to cover everything up.

      So when it is picture time – I’ll take the picture of everyone!

      Wishing you grand weekend. Stay safe feel good about yourself! Sending you warm hugs from WA ????❤.

    • jen-cueva

      Member
      May 23, 2022 at 10:47 am

      Hi @traceyaustralianmigration-co-za, Oh, my heart goes out to you s you battle not only PH but Lupus too. Yes, those treatments certainly can take a toll on one’s body.

      But your red dress and that description were on point! I’m happy that you can think back and know that inside you are a beauty queen and always will be. No amount of drugs or side effects will change that, my PHriend. You may not feel like it, but you are that same beauty queen inside, and I bet outside, too, if you look close up.

      As we age (cough, cough), our bodies morph in many ways. Then add in the PH and Lupus life and treatments, and it is a double whammy!

      You have been through some struggles, and that’s OK; we all do and have those “battle scars” to prove it. But loving ourselves and our bodies for what it pulls us through is another way to find self-love. This is how I remind myself that I am still beautiful, scars and all.

      Our bodies are kick-butts machines and look darn good for how much it carries us through! Big hugs are coming your way, my PHriend.

      @cdvol3gmail-com, your kind words of love and support to Tracey make my heart happy. Y’all are the best cheerleaders. Thank you for your thoughtfulness.

      And yeah, makeup and cover-up can do wonders. Although I only use concealer, color corrector, face powder, and mascara for the most part. Are4 you ladies big fans of make-up or only when you’re going to special events?

  • jill-upshaw

    Member
    May 20, 2022 at 4:34 pm

    Tracey, you made me laugh. If I see the cameras come on, I am usually like – dear God let me out of here now – and take off…..

  • tracey

    Member
    May 30, 2022 at 4:16 pm

    @cdvol3gmail-com thank you for the kind words. I had a very dear friend with scleroderma and she was one of the most beautiful people Ive had in my life, inside and out. I get the same feeling about you.
    @jenc its interesting tnat you refer to our bodies as carrying us through our challenges. I feel as if my body has betrayed me and that probably why i have low self esteem. I think my mind has has carried me through the challenges my body throws at me.
    On the bright side, I was curled up in front of the fire earlier with Enzo the Belgian Shepherd who thinks hes a chihauhau tucked under one arm and Billy the littlie curled up in the other. I was feeling quite content and my sisters husband snuck in 3 photos. And i don’t hate them!!!

    • jen-cueva

      Member
      May 31, 2022 at 12:07 pm

      Hi @traceyaustralianmigration-co-za, IKR, isn’t it funny how differently we process things. Oh, girl, I have felt my body fail me time and time again. But in the end, it is keeping me the living, breathing, talking, functioning woman I am today. Well, my mind depends on the day post-COVID and traumatic hospitalizations.

      Aww, I love the image of that pic that you painted. You and your boys curled up in front of the fire. I know you all loved it, and that picture shows it all. Thanks for sharing; take care of yourself, and have a great new week.

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