But You Look Fine…..

We’ve all done it.  We’ve seen that person get out of the car at the local shopping center while parked in a handicapped spot. And thought, “There’s nothing wrong with them, who do they think they are?”  I’ll admit it I’ve thought that. And I think that’s the mentality of most. If you can’t SEE the disease it’s not there. Right?   NO Oh so WRONG!!!! Here’s some food for thought. 

So if 96% of illnesses are invisible that just leaves 4% that one can outwardly see. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker (U.S. Department of Commerce).  So you can only imagine how that number has increased in the last twenty years with medical advancement.  Chances are someone YOU KNOW has an illness that they are suffering from that you can’t see or may not even know about. 

So what exactly are invisible illnesses? They are conditions that you can not see by just looking at someone. These could be things such as: Anxiety, depression, mental illness, Autism, Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Endometriosis, Interatitial Cystitis, Chrons Disease, EDS, epilepsy. Just to name a few. 

So how do they hide their disease and how do they feel? Here’s my story!

You may look at me and simply see a healthy-looking, overweight 30 something. However, just by looking at me you would never know the things I suffer from.  You wouldn’t know I have disabiling migraines, Systemic Lupus, Insomnia, Fibromyalgia, Interstitial Cystitis, Endometriosis, and Adrenal Inssufiency.  None of these things can be seen outwardly. 

You wouldn’t know that I am almost ALWAYS in pain somewhere. Whether it be my back or my hands or even my feet. Something always hurts even on the good days. You wouldn’t know that chances are I didn’t sleep well the night before because of said pain. And I’m so tired that it took 15 extra minutes to convince myself to get out bed. Even after taking my medicine 45 min before finally rolling out of bed.  And then I spent another hour getting through the process of showering, hair, makeup and getting dressed because I had to take 4 breaks. And by the time I’m done with all that, I really just want to get back in bed because I’m EXHAUSTED and it’s not even 8am. 
You won’t ever see me cry because I had to cancel plans for the 3rd time with my best friend. Because that is something I hide. You wouldn’t know that it rips me apart to have to stay home when everyone is out doing their daily activities. You wouldn’t know that grocery shopping is the vain of my existence. And something I have to mentally prepare for because it…..takes….so…..much……energy. And then actually putting the groceries away……that’s a whole different story. 

You will never see my utter frustration with constantly being sick. I’m sick and tired of being sick and tired. Go ahead and think what you will. “She can’t really be sick again, can she!?”  “I bet she just doesn’t want to work so she says she sick!” Let me answer those questions. Yes, if I actually tell you I’m sick. I’m sick. The rest of the time I hide my illness for fear of being judged. As for just wanting to stay home. NO. I would much rather be in the workplace than on my couch. I didn’t go to college for 6 years not to use my degrees. 

By looking at me, you would never know that I may have had a migraine for three days. And am fighting the constant urge to throw up because of the migraine. You wouldn’t know that I might be having a hemiplegic migraine and my hands are going numb, and it’s hard to talk. You might see me in public with my shades on and think nasty things about me, none of which are true. I don’t have a hangover. And I wasn’t beaten up. I simply have a migraine that won’t quit. So don’t be so quick to judge. 

To talk to me you still probably wouldn’t see any difference in me. That is until the Brain Fog hits. It’s a thing!! Much like pregnancy brain or Chemo brain. You probably wouldn’t know that I constantly lose my train thought, sometimes in mid sentence. Or that some days I spend a lot of time looking for things that are right in plain site. You will probably notice me hunting for words while speaking. No, I’m not on drugs, or alcohol. I simply have brain fog associated with my invisible illness. Remember it’s a real thing….. look it up if you like. 

By looking at me you wouldn’t ever know that often my bladder is on fire and I have to urinate all the time. And I may get up four to five times a night to do. Yes at the ripe ole’ age of 31!!   You also wouldn’t know that many days out of the month I have severe pain in my belly. Either caused by the Interstitial Cystitis or by Endometriosis!  The pain can be disabling at times. And I would like to cry and lay in the fetal position. But I don’t! You also wouldn’t know that my chance to carry my own baby is slim to none now due to my invisible illnesses. The one thing I have wanted more than anything my whole life is no longer a possibility. But you can’t see that! 

Another thing you would never see by just looking at this 31yo lady is that the depression can be real. If you suffered from all the things I mentioned above you would probably be depressed too. You probably wouldn’t know that there are days when getting out of bed feels pointless. And crying is the only thing that seems to help.  Anxiety is also real. You never know when you get out somewhere if one of these diseases will strike its ugly head. Then what happens? How do you excuse yourself to head for home? Will I make it home safely? Should I bother my working family to come get me? All things you have to worry about because you never know when you could get sick. 

Any invisible illness can take over your life. And not usually for the good. There are so many struggles. Loss of friendships and family members because they don’t understand. Or don’t take the time to learn. Loss of wages/job because of being sick. And anyone who says getting disability is Easy is so WRONG. It can take years for people with an “Invisble Illness” to get approved. Because just like you the judge can’t see if either. We look fine on the outside.  

If you take anything away from this please thing before you hurl thoughtless, mean words at people. Try to be less judgemental when you see a young person parked in the handicapped spot. He or she probably needs it or they wouldn’t have it. Also, try to be a good friend! And know that even though we may cancel 5 times before we can actually have dinner with you, doesn’t mean we don’t value your friendship. It just means that we are listening to our bodies. Lastly, remember what your Mama taught you. “If you don’t have anything nice to say, don’t bother saying anything at all!”

I hope this encourages others to share the things that no one can see outwardly due to their Invisible Illness. Let the world know what you go through. And others in the same boat know that they are not alone!!

-Amber

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