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It is okay if all you did today was survive. – Unknown

Do you know that feeling? The awful feeling like no matter what happens you just can’t get ahead? The feeling that you are inadequate because your life doesn’t look the ones you see on social media? Or feeling like you must be crazy because you deal with a full range of emotions, oftentimes all in one day? Feeling like that you are failing at life because you didn’t get your laundry put away or the dishes out of the sink? If you can relate to any of those things it’s okay! You are just like the rest of us! I wish someone would have told me that long ago  

No matter what anyone tells you, it is okay if you struggle. It is okay that you don’t always have your sh!t together. When you live with a chronic illness life isn’t ever going to be easy. In fact it’s often quite messy. Despite the “perfect lives” we see all over the internet, life isn’t all roses and champagne. Instead it is full of houses that need to be picked up, and sinks full of dirty dishes. 

It is full of days when the only time you can peel yourself out of the bed is to use the bathroom. This is real life. And real is OKAY! When we live in a time of the highlight reels and edited pictures it is easy to forget that no one, I mean NO ONE, lives a truly perfect life. But it is easy to feel inadequate in your own skin. But let me say this again, it’s okay!!! In fact it is more than okay to not always be okay. 

There will always be times where something unexpected happens. An unexpected challenge or a flare out of nowhere. There will be a time when you find yourself full of stress and worry, with no idea what to do or where to turn. There will be days where you lack motivation and feel as thought just have NOTHING left to give. When that happens you are suddenly full of self doubt. You feel like you have to be strong no matter what you are going through. That it isn’t okay to cry or admit that you are NOT OKAY. But that is not the case. You have to remember that IT IS TOTALLY NORMAL NOT TO BE OKAY all the time. 

I always wonder though, where the concept that we have to be strong all the time came from? Who told us that we couldn’t cry? Or shouldn’t show our emotions? In many cases no one did. It is something that we have contrived in our own head. We tell ourselves that if we show our emotions or admit that things aren’t going the way we planned that we are weak. Many times we feel like if we don’t show our cards then maybe no one else will see the real picture. Maybe they won’t pick up on the fact that we are not okay.

If I have learned anything on this journey through chronic illness it is that the more you try to resist how awful you feel and pretend like everything is fine. The worse you will end up feeling. You have to give yourself some grace. Let your body feel all the things. While also fighting to get out of the giant hole you found yourself in. Allowing yourself to work slowly towards dealing with your feelings emotionally and physically.  No matter how dark it seems on your darkest of days the sun will eventually come back out. When it does, you will remember that what you are feeling is okay. 

That being said if you only allow yourself to share the highlight reel of your life you can’t be upset when those around you don’t understand what you are going though. If you aren’t willing to be real and open up how can you expect that from anyone else. We have to remind ourselves daily, or more, that life wasn’t supposed to be perfect. No one lives a perfect life.  NO ONE. 

In life there are always going to be ups and downs, peaks and valleys. Lives are full of messy houses, piles of laundry, howling dogs and cats, lawns that need mowing, and last but not least dirty dishes.  For those living with a chronic illness you have to remember that just like anything else there are going to be good days and bad days. Days full of pain and fatigue. As well as days you feel so good you almost, for a moment, forget that you are even sick. 

There are always going to be days where everything that could, goes wrong. No matter how you are feeling or what is going on in life. You have to be honest about your imperfect messy  life. Not just with those around you, but also more importantly yourself.  If you get nothing else from this, please remember above all that it is okay not to be okay. In fact it is normal.

With Love,




3 thoughts on “It’s Okay To Not Always Be Okay

  1. What a lovely, supportive post, Amber – I needed that today!

    I’m pretty good at being open and honest and not hiding my feelings, but I know I can be too hard on myself and put too much pressure on myself when I don’t feel well. I struggle with the “must do”s. Also, in dealing with other, “normal” healthy people, even though friends and family all know about my illnesses, I can’t just constantly tell them how bad I feel – that would make people uncomfortable and either elicit pity or them just avoiding me. What saves me is “safe places” where I can be fully honest, like chronic illness groups or blogs (like this one!) or social media circles just for us.

    Great post & very thoughtful – thanks!


    New Book: Finding a New Normal: Living Your Best Life with Chronic Illness

    1. I can totally relate to everything you said. I have trouble being 100% honest with my non lupie friends. And honestly sometimes with them too. But yes I worry that being so brutally honest would make my friends uncomfortable. Sadly I don’t have a ton of “non sick” friends. Over the years most have walked away tired of my cancelling plans or me guessing that they just couldn’t deal. But who really knows. Feel free to always share anything I write that hits you in a good way. I want everyone to know that they don’t have to be okay. Thank You so much for taking the time to tell me this. I love reading comments. It gives me fire to keep writing and keep sharing. So Thank You. 💜💜
      Big hugs!

      1. Sorry you have lost friends during all this 🙁 I lost two friends early on – I guess they just couldn’t deal with it. I think some people don’t want to face the fact that if this hit me out of the blue, the same thing could happen to them. Actually, my own sister has never acknowledged my illness in the 18 years I’ve been sick!

        Wanted you to know that I also included this post in my Weekly Inspiration post, featuring posts from other bloggers, and I will share this on social media, too:

        Thanks again for the inspiration!


        New Book: Finding a New Normal: Living Your Best Life with Chronic Illness

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