Choosing To Live My Life Transparently

 

I have been working at living my life transparently. To live my life transparently means that I live my life openly, that I share what I’m going through, my ups and downs, my successes and failures, my struggles and disappointments as well as my successes and happy moments. To live my life transparently does not mean that I am not afraid of being vulnerable, but that I am alright with sharing that vulnerability with the world.

The decision to live life transparently was not easy for me. It took a long time for me to get to this point, to be ready to share. It took a long time to get past the fear of exposing myself, the fear that if people knew the truth about me, they wouldn’t want anything to do with me, if they knew how sick I really was, they wouldn’t want anything to do with me.

 

It took me 10 years to get to this point. 10 years of isolation to reach a point where I was ready to reach out and share. 10 years before I was ready to let anyone in. And the sharing started slowly. Admitting I was sick was the first step, admitting it to actual people. It was hard at first, more than hard. After a lifetime of being strong on my own, it was hard to say, I’m sick, here’s what’s wrong…please don’t run screaming away from me.

 

But I said it, and no one ran away; instead, I found community. I found purpose. I found that as I shared what I went through and what I was going through it be, it began to help me. My story and experiences also began to show others that they were not alone.

 

To live my life transparently means that I have to open my life up to being vulnerable. This is not for everyone and like I said, it took me a long time to be ok with this. I’m still scared of being vulnerable, but the more I open myself up, the easier it gets. The more I open myself up, the greater the chance that I find someone else going through the same thing and find an ally.

 

I’m not saying that living my life transparently is easy. Nor is it a choice for everyone. But after a decade of silence, it was the right choice for me. I felt compelled to share my life and my story for some reason, and in doing so, I found my purpose, and I’m, hopefully, helping someone.

 

Article written by staff writer, Agnes Reis

Agnes is a nursing student in Minnesota. She was diagnosed with CFIDs in 1999 followed by fibromyalgia the following year, along with lifelong allergies, asthma and migraines. She can be found at brigid22.wordpress.com or @brigid22 on twitter, but cautions twitter followers that there’s a heavy dose of sports and nursing along with the spoons.

©2019butyoudontlooksick.com
  • MelanieBlau

    Kudos to you. I have found trying to do this really hard myself. People who I always considered to be close friends have all but disappeared on me. On the other hand, people with whom I didn’t think I had any kind of close relationship have come through and surprised me.

  •  My heart goes out to you in understanding for, besides my parents, I have had the same experience as you describe, even from my adult children and ESPECIALLY my husband, who ‘doesn’t want to hear about it.’ It makes life more difficult, I think, when you ARE trying to cover up your pain and disabilities (I have had non-epileptic related seizures since I was a baby, controlled w/meds, but still affecting my life on a grand scale – and increasing disabling pain as a result from 2 major car accidents in the past – plus one year when apparently all the stress got to me and my entire body just shut down, I almost died, and had to have 3 operations. That was back in 2009 and my body still hasn’t recovered from some of those ‘issues.’) The hard part about not being able to live ‘transparently’ is that it’s almost like living a lie. You are trying to smile, be ‘upbeat,’ move like normal, even when you are in pain, and sometimes you can’t pull it off. And that’s when people pull away, react to you, ‘don’t want to hear about it,’ etc. Or, in my husband’s case, just get angry!!!
    I’m sorry that you have to go through this… It shouldn’t be this way for someone who needs support and understanding and YES, SYMPATHY! So though I don’t know you, I’m passing on words of support and sympathy for you right now, “T.” 🙂

  • Beth

    Witht my friends and family, I can be transparent about my illness, but at my job, I cannot let anyone know what is wrong with me, lest I be viewed as a liability. I was fired from my job of 11 years after they got fed up with my intermittent FMLOA. Of course, that’s not the reason they used, they fabricated some offenses I never committed, along with witnesses they never produced, and there I was…career destroyed. After 8 months of being blackballed by my industry, I managed to land a new job which is so incredibly stressful that it has made my illness, chronic daily migraines, about 100 times worse, and I am terrified of anyone finding out. I’ve already missed three days of work in four months and been writtene up. I feel this will never end.l

  • Dawn

    I love to share if I’m asked which rarely happens. I hate the phrase “You look good”. Looks are so deceiving. They can’t see inside me. I have PAH which affects my lungs. People I work with just ignore the fact that I’m sick. My family is good about helping me after I’m exhausted & in alot of pain. They forget about it until then. I’m to blame there because I don’t ask for help & still think I can do everything.

  • I appreciate your approach.
    It is quite difficult to live transparent life. You decided to do so. It really require courage that you have. What one needs to live in this world fearlessly is courage and you have it.

    It may be difficult initially, but once you gets used to it, you will feel good.

    Very inspiring and courageous story.

  • Eileen K.

    I am so inspired after reading this. I am still struggling with letting people in to my world in regards to how I’m feeling/doing. Hearing “oh but you look healthy” has been exhausting to hear and equally as exhausting to counteract. I’m not fully able to reveal myself and become so vulnerable to the verbal attacks from people. I’m not asking for sympathy, just understanding. Thank you so much for sharing.

  • donna green

    I was like Iris, married to a narcissistic husband many years. I have constant pain-managed by medication, exercise.
    what helped / helps me is my aha moment ages ago when I thought “I’ve done nothing wrong. ”
    Knowing that has given me courage.
    It removes any shame or feeling embarrassed etc.

    I find people can be very shallow, ESP men when it comes to dating (I online date).
    It seems to tap inti their fears and people can be incredibly rude.
    a friend has had terrible comments re her nit working etc-has chronic pain.
    People still don’t get it.

    Where its appropriate I am straight to the point and speak from a place of power.
    Its really good.
    I am working on allowing others to help.
    I have been told I hide it.
    I think these patterns are from no support from ex for many years.

    So I did nothing wrong so I will be damned if I will let others make me feel “less than” because of their fears and issues.

    Have a great day spoonies!
    Donna

  • I am touched by your story.

    I tend to live my life transparency too but I do not that on purpose, I can’t keep my feelings for me…
    My friends tell me that everyone can “read in me like an open book”, I am way too much expressive/spontaneous and sometimes it’s a really bad default!

    But I admire the path you have taken to reach this point, and you seem to no regret it at all!
    Thanks for sharing.

  • T

    I appreciate how open you are about your illness. I, however, have found that people have pulled away from me instead of becoming closer or more understanding. Unfortunately, this includes family and people that I thought were my friends. I have never asked for sympathy, just understanding. I am sure that I am not the only one this has happened to.

  • thanks for all your thoughts and responses on transparent living. I have been doing my best to live that way for four years now. I thought it was because, having died twice, I had faced the ultimate fact and truth of life and so could not live with illusion in any form. My illness is not lupus, but I am so encouraged by people who testify that when they share, more people stay in relationship than run away. However, my illness involves bowel incontinence. So, with the distaste and disgust of that, I still take a long time to trust and share the full truth. As I reflect on what you have written I am beginning to think that isolation happens anyway, maybe it is better to have around us only people who can truly accept us for what we are. Now, here’s a very confronting insight to have come to – perhaps the disgust I fear is rooted in self-disgust. Heavy!
    Thank you all for your insight and honesty. Your collective wisdom, insight and honesty is of great value to me.

  • It is definately healthier to admit my physical struggles, as Deborah said, I don’t “look” disabled. In fact, I look quite youthful for 50. However the injuries and pain from an auto accident 11 years ago are with me every day.

    But I do struggle with how much to share. I’ve learned to manage well and live a very full life, yet everything I do comes with a price of pain and fatigure. Thank God for my husband and closest friends who have seen and understand. I don’t have the energy to really care what other people think. And honestly, that is quite freeing! :0)

  • Mandy

    Thank you for this – it could not have come at a better time. After living three years with a chronic illness where I am still searching for that “cure” sharing with anyone, including my parents is hard. You see, I don’t want to be looked at in a different way even though just three weeks ago my disability was approved. Going through that step was hard and I think is finally helping others to realize the situation I am in. Because I have an invisible illness people just don’t understand. I have been stuck in a fog of pain and depression for too long and I just want to pull out of it. Maybe living more transparently, and sharing just what is really going on with me is what I need to do. I have considered it but somehow still feel ashamed that I am sick. I know how strange that sounds but I am working towards becoming more self accepting of the situation I am in.
    Thank you for this site and your articles, they help me greatly.

  • Louise

    Thank you for this. Living in Isolation when you are chronically ill takes a huge toll on your mental and physical well being. I have found for every one person that rejects you when you admit your illnesses, there are five more that say “everyone is dealing with something” and welcomes you.

    Even the healthiest of people have limitations, so it is smart to know them and to be honest about it.

  • When I started telling people I couldn’t do stairs, my life became so much less stressful. Living in fear of a job that might have stairs, I became very worried. But now I’m very upfront about it, so people have advance warning that I can’t go to certain places. Thankfully I’ve only ever worked with people who are accommodating to that.

    If anyone asks, I’ve got a pre-rehearsed spiel about my condition (fybromyalgia) and how it effects me. Because of my age (24) and not “appearing disabled” apart from using a crutch, people often ask me “Oh, what have you done?” thinking that I had an accident or something. They’re often very surprised to hear the truth, but it’s far better than fobbing them off or making up something.

  • I used to keep all of my problems to myself. But then I was married to a man who believed that no-one but him mattered and I could be punished for saying any consideration.

    I’m still amazed that after a year with Mr Wonderful, he still wants to know in great detail everything about my day, how I’m feeling, whether I need help with anything, if there’s anything he can do to support me, etc, etc.

    Life is very different, when someone cares about what is going on.

  • I have found it much easier to co-exist with chronic illness when I am honest about it. Trying to pretend I was fine when I wasn’t, especially those first three years before I had a diagnosis, took its toll on me physically. Not worth it. I don’t run around spouting statistics on autoimmune disease to people who haven’t asked (although it’s tempting, lol), but if someone wants me to do something I cannot do, I tell them why. I figure if I have to be sick, I might as well try to help others understand it if they show an interest.

  • deborah anne

    i applaud you for sharing your story. i recently was told that i “DONT” look disabled” by a HUD mgr…even tho shes seen me in my wheelchair. I thank you for your insight.. blessed be..