While speaking with two different people on two separate occasions this weekend I realized the biggest struggle of having an autoimmune disease.  We were discussing how difficult it is to have an invisible disease.  These are chronic, autoimmune and have no cure.  Basically, we look normal and healthy, but are actually very sick.

A few of these diseases are:
Lupus
Rheumatoid Arthritis
Multiple Sclerosis
Crohns Disease
Lyme Disease
Celiac Disease
Depression and Mental Illness
Sjogren’s Syndrome
And way too many more


For the past four months I have been doing my best to educate people and give them a better understanding of lupus, which is my disease.  Realizing how many people are uneducated or simply don’t even want to be regarding invisible disease hurts me terribly.  What is even worse is the look some people give me.  It’s a look of skepticism.  That I am faking it.  Searching for attention. 

The worst part for me is the internal struggle with myself.  I want to be super mom and wife.  Letting my family know how I feel and not being able to do everything for them makes me feel like a failure.  I run my errands every day, go to yoga, make dinner, keep my house clean, chauffeur the kids around… like every other parent.  The difference is, this takes up every single ounce of energy I have and then some. I have given my family a false perception of my disease. As I am getting older I can no longer keep up the facade. I am hurting.

Very infrequently will I say, “I am tired.”  The outer circle of autoimmune disease does not understand our tired.  The response is often so insensitive.  I have heard, “Really?  I work all week, what did you do?  You should commute into the city every day, that’s tired.”  There are so many more, but you get my point.  I usually do not respond because it would go something like this, “There is science backing up my symptoms.  Maybe if you open a f***ing book and educate yourself I wouldn’t think you are the biggest a**hole in the world.  You are terribly insensitive and I pray to God you never feel the way I feel!”  How do you think that would go?

Living my life on a ketogenic diet has drastically improved my inflammation and flare ups.  What it has not helped is the fatigue.  There are no magic pills or treatments for that.  I do not know what else can be said to make people understand what complete exhaustion from every day, normal activity feels like.  We do not want to feel this way, we do not want to burden others by complaining, we muddle through.  You still look at us like we are lazy.  To prove the naysayers wrong we try to do everything only making our symptoms and disease worse. The cycle continues…

I do not write about this for you to feel bad for me.  Please know I am a WARRIOR!  Yes, I 100% see myself as this.  I fight for my life, family and health every single day and I am succeeding.  I fight to educate you so you can understand what one of your family members or a friend might be going through.  Please, we need your support, not your judgements.  Just because you do not understand how we feel, that doesn’t mean it isn’t real.