Really? Wow! You don’t look sick!

Many of us deal with an invisible illness (physical, emotional, mental), we don’t look sick!

Typically, if we are out and about or even within our own family,  if we see or know someone that looks outwardly ill or has a visible disability, hopefully, we feel compassion, give them space, and help them, usually without thought or frustration. Our very human nature is that if we can see it, it exists.

Sometimes, out of pure surprise, when people find out I have PTSD, they say, “Really, Wow, you don’t look sick.” I don’t take offense to it because it is a natural thought. It’s not coming from a place of dismissal, or maliciousness. But, I do take offense when the next words are, “Can’t you just get over it?” There is something about those six little words that rub me wrong. I had a doctor say to me once, “You look fine, you survived, can’t you just get over it?” Strange, coming from a physicians mouth, and I’m smart enough to never go back to that person again, but, whoa, that stopped me in my tracks. I looked at her, and asked, “Did you really just say that?”

Some of the invisible symptoms of my PTSD are flashbacks, hyper-vigilance, and becoming extremely overwhelmed from triggers. I don’t freak out and run through the streets ranting, raving and screaming; but I do get out-of-sorts, can become kind of spacey, decisions become impossible and I’m sure I look shut-down and unhappy. Or, I look shut-down and have that ridiculous, I’m okay smile plastered sweetly on my face.

When I’m out with friends it’s usually not a problem because they are aware of my “tells” but if I’m with people who don’t really know me and what to look for, it can be uncomfortable for them. I don’t ever want to feel like the elephant in the room so I will try to talk about it if it’s happening or I have to leave. What I don’t want to hear, “Is why do have to respond to triggers? It makes you a victim again.”  Really? When someone who has a physical illness (perhaps asthma and gets triggered and has an asthma attack, do we tell them they are acting like a victim). If I’m putting myself in harm’s way, physically or emotionally then maybe someone can make that sort of judgment statement? I’m not sure, I don’t really judge illness when I’m not living inside of that person.

I recently had breakfast with my good friend. We have known each other for years. We were talking about how after my recent travel experience,  I realized that my family and friends have created a “new normal” for me because of my many deficits. When someone wants to hang-out, they tend to say that they will pick me up. When we go to restaurants, we tend to go to the same place so I don’t get overwhelmed with menu choices; even my boss will end a meeting if she sees my concentration waning. A two- hour scheduled meeting may end after fifteen- minutes. My breakfast buddy was nodding her head in understanding because she has had two knee replacements in the past year and has had to make changes in her life because of physical challenges. We were getting ready to leave, and wincing, my friend said her body was sore from the weather changing. My tongue-in-cheek response, was, “Really, just stand up, you don’t look sick!” We laughed and laughed because that’s how easy the thought and words can form when we don’t see someone’s’ challenges.

For many of us who have survived trauma (I expect it may be the same for people who have a chronic physical illness), we can be the master of minimizing our experiences, with our own tired, worn out mantras of, “I survived it, so what’s the big deal.” I know I have questioned ad- nauseum to myself and my therapist, why can’t I just get over it?  It’s tired and worn out because why would I just get over it? And If I could, I would have chosen that a long time ago.  I wouldn’t ever expect someone else to just be okay, would I? No, absolutely not. A person feels the way they feel until they have processed and passed through all the transitions of healing. And if there are multiple events it will take that much longer.

I am beginning to experience the depth of grief that still lingers inside of me. Part of the grief is sadness for the life I know I was never destined to have because my decisions were pre-determined for me for so many years.  But, in spite of that, I chose to make a good life from my lied to, tattered soul. Part of the grief is sadness for the life I had for the first twenty years.  For the pain, the suffering, and the squashing of my potential.  I’m proud of what I’ve accomplished in spite of what happened to me.

So when others say to me, Why can’t you just get over it?  You survived and have a good life with a great family and lots of great friends and support. I say, “Yep, I did survive because I stuffed all the feelings, emotions, abuse, terror and pain down as deep as they could go.” The plan was never to resurrect any feeling or memory. But PTSD doesn’t work that way.  I have complex PTSD. It’s an invisible illness, which because of the severity of my trauma will most likely leave me with symptoms (although now more manageable) for years and years to come. 

I know I don’t look sick, and I probably will never get over it, But I have learned to live with PTSD. Yes, thankfully, I did survive. Just surviving doesn’t suit me any longer, living and thriving is my gold-standard now.

image source: Pixabay

 

Thank you for reading my memoir,  Untangled, A Story of Resilience, Courage, and Triumph

http://www.amazon.com/Untangled-story-resilience-courage-triumph/dp/1514213222

https://www.amazon.com/Untangled-story-resilience-courage-triumph-ebook/dp/B013XA4856

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63 thoughts on “Really? Wow! You don’t look sick!

  1. It’s your last line that really gets me. “Just surviving doesn’t suit me any longer, living and thriving is my gold-standard now.” The world seems to expect of us sick or disabled people to be content just to survive – heaven forbid we should expect or strive for more. It’s one of the most difficult things for me about identifying as disabled.

    Liked by 1 person

  2. icallitlife

    I love this. I still struggle to “help” people understand my bipolar depression. It’s complicated, I’m complicated and people don’t always see or understand I’m “sick”. Just a different kind.

    Liked by 1 person

  3. A broken leg takes weeks to heal from completely. A broken spirit takes a lifetime to heal from, and may never heal completely. Care and compassion is helpful and appreciated.

    People don’t realize that mentally, even a broken leg can take a lifetime to heal from.

    Liked by 1 person

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  5. This field was intentionally left blank

    Reblogged this on the silent wave and commented:
    The whole “but you don’t look sick” misconception also applies to people experiencing PTSD (Post-Traumatic Stress Disorder). While I don’t consider people experiencing PTSD as “sick”, per se, it is indeed a condition that deserves gentleness and respect.

    I’m sharing this not only because I’ve been diagnosed as PTSD, but also because several close family members and friends have been, too, and I want to extend that love and support to everyone.

    This is a beautiful blog post; very well-written and an excellent read 🙂 ❤

    Liked by 1 person

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  7. Excellent post Alexis. When trauma is so extended and brutal it is no wonder that it become ingrained permanently. You are an amazing woman to have overcome that period in your life to the extent you have and for sharing your story. Part of people’s awkwardness is that they do not really know what to say and the same can be said for some of the medical profession. It is great that you have such a warm and empathetic support system. Sally

    Liked by 2 people

  8. Yes! Yes to it all… You can’t just get over it. I had a team of therapists at one point, I actively work on getting over it, but all the effort to ‘get over it’ is not a waterfall that washes you clean, it’s a drip.I described it ‘as if I had food poisoning six months ago and keep talking about it for sympathy.’ Really? That’s what you think, you who has never experienced complete annihilation (at least figuratively.)

    You just take things down to your core and add layers very slowly, as you can. Grace is learning to be true to you. xo

    Liked by 4 people

  9. Very well said. I’m sorry you have to deal with insensitive jerks on top of dealing with PTSD. I can relate because I have a developmental disability that is often invsisible so I get “You don’t seem disabled, just act normal.”

    Liked by 2 people

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    Awww 😘😘. I’m so sorry you had a rough time before but totally ecstatic for you that you’re smiling now. That made ME smile 😁😍. I copy-pasted the link into my blog notes 😂😘❤️. Keep smiling luv! Hope your day/evening is awesome from here on 💞💜

    Liked by 1 person

  11. And living and thriving you will my dear friend! Another brilliant post!
    I just finished reading your book and I am totally in awe of all you achieved despite all the trauma you suffered! Your resilience and will to live and fight, is incredible! When I was reading the deeply upsetting stuff, I had to pinch myself and say ‘I can’t believe this really happened. I hoped that it was fiction..You are an inspiration Alexis and I just want to give you, your family, your therapist and everyone else that supported you a HUGE HUG! ❤

    Liked by 2 people

  12. The title caught my attention…everytime people get to learn about my medical condition..they’d say…no way..you don’t.look sick…and i would be disappointed and say..you dont have to really look sick to be sick..when we are sick our society expects us to look awful…but come on..we can be beautiful but sick..right?

    Liked by 2 people

  13. Thank You! It is frustrating when you have to remind the people closest to you. Especially on those days, when you have had it “here” with whatever the symptoms are presenting. For, you Im sure if you’re cold you would like nothing more than to throw on a sweater. 💕

    Liked by 2 people

  14. Wonderful post! I have a hidden problem, too (chronic nerve pain from botched surgery 15 years ago). Certain tasks. e.g., handwriting and wearing long sleeves, are difficult and painful. While I certainly wouldn’t want to build my life around my problem or wear a sign around my neck, I’m frequently frustrated by people who are close to me and yet ‘forget’ I have the issue. They ask me to do things they could easily do for themselves and seem shocked when I say I’d rather not. “If your cold, why don’t you wear something with long sleeves?”

    Liked by 3 people

  15. TheOriginalPhoenix

    It’s really annoying because society expects us to be perfect and not have problems (so we have to hide them if we have any) and, at the same time, people act all surprised when we have problems but no billboard flashing above our heads. :/

    Liked by 3 people

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