She looks nice today. His shirt is terrible. That movie star looks fat she should exercise more.
That singer is too skinny.  The world we live in is one where people are paid to judge other people’s looks and talents and the general public watches and judges along.
 
It happens to those of us who are living with chronic illness too.
 
You don’t look sick.  It takes almost all my energy to not look sick.
You're so strong you’ll beat this.  How do you know? I’m scared shitless that I won't.
You’re a ninja, a survivor! I’m barely holding on somedays and don’t feel like either of those.
You need to exercise. Every muscle and joint in my body hurts. Golds Gym is not an option.
Eat organic and gluten free. Sure if you buy it for me (expensive!) and cook something that tastes like food.  Most days I’m too tired to cook anything at all.
Be positive! Attitude is everything.  No. Great specialists and treatments is everything. When you say that I feel like you are dismissing how much I’m going through.
You’re an inspiration.  I don’t have any idea what I’m doing. I’m just surviving the best I can.
 
Let’s stop labels and putting people in boxes.  While I may feel like a rockin’ ninja one day, I may feel like a wounded puppy the next.  That’s how my disease works. 
 
And while my life and how I handle my disease inspires you, Rather than call me an ‘inspiration’, I’d rather be called your ‘friend’.

​

You don’t look sick- is something people say to me- alot.  Thank you. 
Want to know a secret? It look twice as long as it used to for me to shower/bathe, do my hair and put on my shoes.  Every bit of my energy is accounted for. There is a hierarchy of must dos on my daily list.  Anything related to my kids and anything related to my job comes first.  Then I’m simply exhausted.  It’s maddening to me because my mind races with all the things I want to do that I simply cannot do the way I used to do.  My full-throttle is now three-quarter speed.
 
There are days that I work with my hair in a ponytail and wear yoga pants two days in a row.  There are days that my feet feel like I’m walking on razor blades.  There are days that my head throbs and my body feels like I’ve been hit by a truck, my hands get so swollen that I can’t take off my wedding ring or even type on a keyboard.  But I keep going.
 
The other day I used my disability parking placard for the first time.  A heavy-set lady gave me the side-eye and I just smiled at her.  I know she was judging me.
No, I may not look sick, but I am.  Reserving the energy (and pain) it takes to walk a long parking lot with an armful of groceries will help me accomplish all the other things you do that you take for granted.
 
Looks can be deceiving.  What I want people to know about me (and all chronically ill people) is that I will have good days and not so good days.  I may look amazing one day and like a homeless woman the next.  That's just my life.  And not "looking sick" helps me to feel better about myself and hang onto some normalcy.
 
Rather than tell someone with a chronic disease that they “don’t look sick”, how about asking if there is anything you can do to help, words of encouragement or a gentle hug.

I like invitations to hang out, eat a meal, or watch a movie!
​xoxo
 
 

I am a spiritual person. 
I have faith and a belief in something bigger and better than this present we live in.  This isn’t a post about religion.  It’s about me and what helps me get through my days.
 
In my work I support hundreds of stage 4 cancer patients.  I’ve visited more people than I can count who were in their last days. And I attend dozens of funerals a year.  I couldn’t continue doing this job if I didn’t believe in something greater than this life we live.  There has to be an afterlife where there is no cancer or suffering- where we will see our loved ones again. 
​That belief brings me comfort and peace.
 
I was diagnosed with stage 4 genetic liver disease 3 years ago and it was a shock - personally and spiritually.  I didn’t stop believing in God/Jesus Christ, but I did ask, why me?
I’m the person who dedicated my life to a calling of helping cancer patients and I get diagnosed with something just as serious- without any treatment options or cure.  Why?  Ironic much???
 
With my diagnosis, life of scans and watchful-waiting, prescriptions and chronic autoimmune illnesses came a heightened perspective of what it’s like being the patients I have served.  I have first-hand knowledge and empathy and a unique understanding that I didn’t really have before.  Was that God’s plan?  No I don’t think so.  But I think my faith in God lets me see a bigger picture and live the life I have been given with purpose.  Perspective and gratitude and purpose.

Faith is bigger than just yourself. 
I can use whatever I am going through to serve and help others. 
​We can be the light and hope for others and in doing so we help ourselves be more than what our disease makes us.

Do you have a friend whose living with chronic illness?  Here are a few ways that you can help him/her and be a better friend.
 
Check in.
Chances are you and your friend are connected on social media or see each other at work or school/events occasionally.  You have a casual conversation via post, text or in the hallways.  That’s not enough time for your friend to share their medical update or discuss how things are really going in their lives.  Carve out time to check in with your friend regularly to talk about whatever they want to talk about. You'd be surprise how few people really want to know how they are feeling.
 
Bring a meal.
Your friend works full time and looks great.  That doesn’t mean that he/she isn’t living with chronic pain or symptoms from their illness.  I can work a 10 hour day but the moment work ends every cell in my body is screaming in pain and I need rest.  The last thing I want to do is cook a meal.  Sometimes I’m even too tired to go out to eat.  Bringing a meal to a friend with chronic illness will be so appreciated. It’s a great reason for a bbq or potluck party! Drop it off or stay for dinner!
 
Friendship 2.0.
While limitations of your friends chronic illness may limit physical activities, don’t stop doing things together.  Your friendship will take on a new dimension. Figure out ways that you can continue to spend time together and experience life’s joys.
 
Patience for the patient.
Sometimes you can do everything you think a good friend can do and it still may feel like it's not enough, or he/she (the patient) is not receptive.  Have patience for the patient.  As humans, we aren’t wired to ask for and accept help.
We do not naturally know how to be a patient or live with chronic illness.  It takes time and a lot of trial and error. 

​Don’t give up on us.   It’s during this time we need you most!