Is my invisible illness really that invisible?

This week (Sept 28 – Oct 4, 2015) is Invisible Illness Awareness Week. There are so many conditions that are invisible. From lupus to back pain, depression to rheumatoid arthritis, cancer to migraines, diabetes to inflammatory bowel disease (IBD).

This got me to thinking about my illness, Crohn’s disease. Is my illness really that invisible?

Yes, my insides have been inflamed, enraged, bloody, full of a maddening, red, bludgeoning rage reaching boiling point. That is invisible.

Yes, many days, I made myself presentable and went to work like a normal person. People couldn’t see just how sick I really was or what was going on inside my bowels every time I ran to the toilet. Nobody could see inside my anxiety ridden head when I was suffering silently with a mind full of nerves, stressing over my symptoms. These things were mostly invisible. Or were they?

For 3 long years I was basically in a constant state of active disease. One very long flare. Yes, some days were better than others and I might have a few weeks or even months of minor reprieve. However I never got to the point of remission. Yes, I had #GoodDaysAndBadDays but during these times, how invisible was my invisible illness really?

IBD is so different for different people. Different symptoms, different diets, different side effects. I tried to mask my pain, put on a brave face, and hid it as best I could behind a smile, but I’m no actress. I’m sure people that knew me could see right through me. Surely my disease was not invisible to them. Co-workers could see me rushing to the toilet every 15 minutes up to 20 times a day. There was no hiding that. My closest friends and family, they could see that this wasn’t the real me. The happy me. The healthy me.

With strangers, perhaps it’s slightly different . Strangers who had never met the regular un-Crohn’s infested Laura. People who didn’t know me pre-IBD. People I walked past in the street, sat next to on the bus or served me at the supermarket. To them, on many days, my disease probably was invisible. The glimpses they caught anyway. I look back through photos of the really bad days and I can see straight through me! Even complete strangers must have looked at me and seen that something wasn’t quite right. My puffy pale prednisone cheeks, my skinny frame, glazed eyes. I looked sick. People may not have known that I have Crohn’s, but surely most people could tell I wasn’t well? Or could they?

My illness may not be as obvious as some, or as those with a physical disability, but it’s still there. If you really look, you can see it. Just as beauty is in the eye of the beholder, is sickness too?

Since having surgery 2 years ago, I am now so grateful to be in remission and healthy again. I thankfully now have majority “good” days, and very few “bad”. I know I am not cured. I still have Crohn’s disease. A chronic illness. But it’s not currently active. So can I now say it’s completely invisible? I have a permanent Ostomy bag underneath my clothes, but for the most part, that’s invisible too.

With Crohn’s and Colitis, some days it’s completely hidden, completely invisible, and we look and feel as healthy as the next person. Especially now for me post surgery, even I forget some days that I still have a chronic disease. Then there are other days I remember well being in the midst of an excruciating flare and it’s blatantly obvious! It feels like there’s a neon sign with flashing lights emblazoned to your forehead saying “THIS GIRL IS SICK”!!!!

Anyone with IBD knows there are some periods of active disease when it’s out there for the world to see. It’s a fight for it not to be visible. But that’s okay. For me, perhaps the invisible part comes during periods of remission and health. If that’s the case, I hope my illness stays invisible for a long time to come. For anyone with IBD, if invisibility of your illness means that you are healthy and free of active disease, and this means your good days outweigh your bad, then I hope your disease is in a state of invisibility too.

I think for me invisible illness comes in waves. The invisibility depends on who is looking at me (a stranger or someone who knows me well), when (during a bad flare or during remission) and for how long (even through a period of mostly good days or months, unfortunately there are likely to be a few days where the illness is more noticeable than others) .

The theme this year is #MyInvisibleFight and there are many, many things we fight for. The two biggest things for me are to be who I really am and to raise awareness. It’s hard to do that if my disease remains completely invisible. That’s why days like today, weeks like Invisible Illness Week are so important. Share your stories, encourage and make people more aware of the daily fights we all go through, and why we do not always feel as well as we might look.

How can we raise awareness if it’s invisible? If it remains unseen? If we mask the pain? Screen out all the bad days? Conceal our struggles? If we disguise our disease so much it becomes unnoticed? Out of sight, out of mind.

Above all, whichever way you look at invisible illness, it’s evident that it is important not to judge, always show compassion, speak out, and make the most of the good and the bad days as much as you can.