You Don't "Look" Sick

Having liver disease has been so hard for 2 reasons: I don't look sick, and it feels isolating.

I can't tell you the number of times I have been faced with a friend, family member, or primary doctor saying to me, "you don't LOOK sick". I used to cringe when hearing this. As the years have gone by, I have learned that liver disease is not the only chronic health condition that fights this stigma.

Navigating the pros and cons of invisible illness

Not "appearing" sick has its advantages and disadvantages. The advantage for myself and my personal liver journey has been that I am not having to explain to everyone I meet why I didn't put makeup on that day or am moving slower than normal. I am not having to disclose a hardship I am going through if I don't want to.

The disadvantage is those around me, family, friends etc., don't understand why I may need to cancel an outing or am not feeling well enough to chat on the phone. Or simply, I don't feel well enough to go into detail with anyone.  This can be frustrating because it can leave a person feeling unheard, misunderstood, and lonely. We wish during these times that people could read minds.

Having my podcast, The Chronic Truth Podcast, I am learning that this isolation, feeling misunderstood, is a very common feeling a person has fighting a severe chronic health condition.

Being a liver patient, our livers don't show a lot of external issues, it tends to leave one, including myself, feeling alone in their thoughts, pain, and diagnosis.

Finding community breaks down the stigma

I highly recommend finding a community, like NASHdisease.net, for support. Here you can chat with others in the exact same situation that you are facing with NASH/MASH. It can help you learn ways to support your liver health, communicate with family and friends about liver disease, and, most of all, learn that you are not alone on this journey.

Get involved as little or as much as you wish. Engage in the polls given, share your own experiences or pose questions that you might having fighting NASH/MASH.

If you have a family member, friend, or caregiver, ask them if they feel supported as well. Let them know they too can log in and join this group. No one will be turned down while facing this, whether it is a patient or caregiver.

Let's face it. This battle can be filled with fear, uncertainty, and lots and lots of questions. This feeling is both for the patient, but also the support system.

You're not alone

We here at NASHDisease.net want you to feel you have a safe place to share and get questions answered. Keep in mind we are not doctors, and for those questions that need a doctor's input, we ask that you direct those to your physician or care team. But, for those we can answer based on our own personal journey, we will give tools, tricks, and suggestions based off what has worked for us fellow liver patients.

I personally found that having one person who acknowledged me and my struggles was enough to remind myself that I am not alone.  Don't hide behind your computer facing this alone, reach out and connect.

Together WE are STRONG.