~by Heidi

I know several of you can relate to what I'm going to say, and to those who can't relate, please be kind. Think before you speak. Think before you whisper and point and eventually laugh. We see it. We feel it. We go home and cry about it. My tremors are back...not that they ever went entirely away, as they are a result of my Lupus CNS (a fancy way of saying that Lupus has attacked my Central Nervous System).

As a precaution, we decided to record it to show my local doctor, just because of the sudden onset, and the way it eases and worsens.

I'm not sure I should have watched that video...or maybe it was a blessing I saw it.

I've always been embarrassed by the stares and snickers, but have never SEEN myself shake.

I don't know if it was the tremors that upset me more, or watching how hard I fought them and failed.

Why am I sharing this with you? Because this is the exact reason we have problems with "Invisible Illnesses". We hide. Whether it's from being ashamed, or just wanting to be treated normal, we've given ourselves that label of "not looking sick"--not that we are SUPPOSED to look sick, we just hide the fact that we are. This is something I CAN'T hide. But even if I COULD hide it, why should I have to? The saying "but you don't LOOK sick" would be welcome right now.

So to everyone who thinks I look "great" (which we ALL love to hear a sweet compliment!) here is what is hiding right below the surface...



Not to "beat a dead horse" or keep with the "same story, different day", but that is EXACTLY what it it like to live with an Invisible/Chronic Illness. Every single day is the "same struggle, different day". We ALL have a choice:

To lay in bed and feel sorry for ourselves, or to smile and try to make it the best day under our circumstances (yes, even while bedridden).

To stay home and hide in shame from our recent shopping experiences, or to hold our head up, swallow our pride, and try again.

To judge people back in the same harsh and ugly way they've treated us, or to realize people judge what they do not understand.

To be angry with others for being ugly, or to pray that their hearts will be softened and they will gain understanding.

To cry when I see the hurt in my children's eyes when strangers are staring/whispering/being bullies, or to smile and hug them, explaining what beautiful souls and compassion they have and will always have for people BECAUSE of my illnesses.

To drown in my self loathing and hatred of my many Invisible Illnesses, or to educate and raise awareness for my illnesses.

So next time you see someone in a wheelchair that looks "normal", struggling to reach an item just barely out of reach, be their arms and help them. If they're having trouble turning around, ask if you can help. If they are in your way momentarily, realize it's very likely not on purpose, and be patient. And above all, if you see someone in a wheelchair, with a walker or cane, don't stare OR avoid eye contact. SMILE and acknowledge them as people too. That woman might be a mom of five children, trying to surprise her hard-working husband on his birthday. That man might be a wounded police officer or soldier, who was shot and injured while protecting YOU. That person might be fighting for their life, slowly losing their battle.

We didn't choose this life. But we choose how to handle it. I choose the second option of each possibility I've listed.

What do YOU choose?


To the lady who rolled her eyes at me...to the woman who made me back my wheelchair up a good 25 feet to "let her by"...to the cashier who became frustrated when she saw me "roll up"...to all the glares and whispers: Invisible Illnesses SUCK! In a big way. I don't have a cast, I'm young, I look relatively healthy. Of course you don't know I'm 2.5 weeks recovered from a life threatening brain surgery, or that I'm not allowed to stand for more than a few minutes at a time, or that I have severe osteoarthritis and 2 types of Lupus, currently in a flare. Yes I'm smiling and laughing. I'm thrilled to be ALIVE! But you don't see the struggle I face daily to sit up in my bed, how painful it is to take my first several steps in the morning. You don't realize I have a migraine that NEVER ceases...ever...24/7, and that there is no cure for my rare type of migraine. All you see is a young woman in a wheelchair, with 5 children in tow (we actually wanted 7), and immediately place judgement.

The point to my post is don't judge according to appearance. You don't know what a stranger's circumstances are. You don't know how difficult it was for them to swallow their pride and sit in that wheelchair. You don't know how difficult it was for them to get out of bed.


    about me

    A peek into the thoughts and  life of a Lupus Warrior, Fibro Fighter, Chronic Migraine Endurer, and Brain Aneurysm Survivor. Not to mention a happy wife and mommy of five beautiful children.

    Below are the ladies that make my daily struggles, less of a struggle...Thank you all!

Hammered Spoons