5 Things People with Chronic Illness Wish Their Loved Ones Knew...Or At least I do

At 30 I never thought my life would already be broken into such divided segments "pre sick" and "post". The day this picture was taken my sister and I were having the time of our lives (this was in the post era if you wanted to know) but as I look at the picture now out of context a see a different scene one of isolation, uncertainty, imbalance and challenge. I consider my self extremely lucky to have the support of an incredible family and spouse but there are still things I want them to know. I would venture to guess that many of my fellow zebras have encountered similar feelings on their own personal journey. I hope by sharing another piece of me it will help you, no matter where you are in your journey.

Without further delay

👉5 things chronically ill people want their loved ones to know as told by one RARE. girl


  1. My Grief is on-Going. Even on the better days I find that I am reminded that I am no longer the same person.I still feel I am mourning the loss of the girl I as prior to being sick to make matters worse I see the hurt in your eyes as you mourn what you have lost as well. It seems to just hit the reset button.
  2. I worry consistently about all of you and I often feel like a burden.
  3. My mood changes all the time. But most of the time I feel close to nothing for this new life and miss the old one we shared.
  4. The future is confusing for me and stills breaks my heart when discussed.
  5. Communication is incredibly hard for me both physically and emotionally. I know it is frustrated but I am trying sometimes its emotionally I can not speak while others I feel like I lose my thoughts faster then I can contribute them.   

​There is nothing easy when someone you love is chronically ill there are so many emotions with so little answers and no end in site. Everyone is doing their best to process because there is no rule book on how to handle your entire life changing. And that is just what it is for everyone who is closely involved their entire life has changed. So today as we head into the weekend I challenge you to listen just a minute longer when talking to each other today cause neither one of you wanted this and there is no easy answer except to love each other.

until next week  🖤🦓stay RARE.

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