Invisible Illnesses: What Do They Look Like?

What  do invisible illnesses look like? What do we see when we can’t see the pain?

Susannah Hunt

This year’s slogan for National Invisible Chronic Illness Awareness Week (2011) is “DEEP BREATH START FRESH.” That’s kind of what you do when you have one of the many respiratory invisible illnesses like asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult-to-control chronic asthma, plus I have a diagnosed wheat gluten allergy and suffer from rotten migraines.

But you, reading this, may also have one of the thousands of invisible illnesses of your own. One that affects every part of your life, just as my illness affects mine–perhaps, even more so.

• How many times have you felt that you were the only one with invisible illnesses?
• That people didn’t understand you because they didn’t know you because of not seeing your invisible illnesses?
• That people thought you were making up one or more of your invisible illnesses?
• That people just assumed you were okay because you looked ‘alright’ because they couldn’t see your invisible illnesses?
• That being ‘well’ was something you’d never be, or you’d never feel?
• That those around you–your nearest and dearest, couldn’t cope because of your invisible illnesses?
• That you couldn’t cope–you’d had it with the invisible illnesses that everyone doubted?

Probably multiple times, and most likely, most days.

Life with an of the many invisible illnesses harbor a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional, and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.
Therefore, because your illness is chronic, incessant, unending, unstopping– alas, it’s invisible.

Back in February 2010, I wrote a blog post entitled “False Impressions: Do you Look Sick?” In it I wrote this:

When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look? So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations– do we sympathize, empathize, or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.

I suppose, nowadays there are aspects of my illness which make it a bit more obvious.

• For starters I carry a POC (Portable Oxygen Concentrator)
• Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.

But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 12th-19th 2011, many people worldwide are joining together to speak out and speak up for those of us who suffer from chronic and invisible illnesses. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.

The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February 2010 blog post, how should a disabled person look?

Here is something else that you might or might not know about my invisible illnesses:

Every 4-5 weeks a huge stockpile of drugs and food stuffs arrives in multiple bags and I get the chore of piling it all into my kitchen larder!

Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic invisible illness can be like. How many people, for instance would know that about me?

So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my invisible illnesses, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before.

I definitely live a richer, fuller, deeper life now, with my chronic invisible illnesses. Plus I have the closest of relationships with my partner, family, and friends.

And importantly, I have learned one major thing in all my illness and suffering. . .

I have learned the true meaning of compassion.

About the Author:
http://mymusicallungs.wordpress.com is the diary blog of a Severe Chronic Asthmatic, who also suffers from Celiac Disease and Migraines. Susannah somehow manages to teach music part time in her local High School. She is kind and compassionate, and even though her illness is always there, she is always smiling.

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