Tag Archives: invisible illness

Excuse me, is my ostomy bag showing?

I have lived with illness for more than half of my life. I was diagnosed 14 years ago, but I was dealing with symptoms even before then. Even though I’m not dealing with active symptoms right now, I still have Crohn’s disease. Having an ostomy has put me in remission for the first time in a decade, but it’s not a cure.

This week is known as “Invisible Illness Week” and it’s a time that we can bring those illnesses and issues that often hide in the shadows out into the light. Throughout the past 14 years, my disease mostly stayed inside. There were the few times when I would lose a drastic amount of weight and it would be obvious in that way, but usually I dealt with it on my own and without others knowing what was going on outside of me telling them I didn’t feel well or whatever I might’ve said.

Now, I wear a visual representation of my disease on my stomach. And I am not in any way advocating that you should think of an ostomy as a “disease” because, in reality, it was what saved me from mine. However, in this context, it is symbolic of my disease. It has been a different experience having what I dealt with transform from being (for the most part) entirely inside to being visible from the outside.

When I was younger and would go to the hospital for my remicade infusions, I was in the same wing as many patients living with cancer and getting their chemo treatment. I remember even at that time thinking to myself that I was thankful that I didn’t have to wear my disease around for all of the world to see. I didn’t want people tiptoeing around me because they could see how sick and frail I was. I figured it was better that I could keep it inside.

But over the years, I have found how difficult it is to carry a disease inside of you. It’s easy to want to just bottle things up and not let on how bad you are feeling, but that gets to be a heavy weight to bear all by yourself. And it does become very lonely. People forget that you’re dealing with constant symptoms. They wonder why you no longer want to hang out until 2:00 in the morning or why you sometimes sit by yourself at parties. They don’t see the war that’s raging inside your body.

ostomy ibd inflammatory bowel disease ulcerative colitis ileostomy invisible illness stephanie hughes stolen colon blog

Now I have an ileostomy and it’s not hiding inside. Granted it is still fairly easy to hide under clothing and most people who I come into contact with on a daily basis don’t even realize that it’s there. But I see it there every day. It is a constant reminder of what I have dealt with over the better half of my life. Not a day goes by that I don’t have to look at it, touch it, feel it. But I realize that’s not really any different from how it has always been.

I know for me, and I think for many others living with inflammatory bowel disease or some other “invisible disease,” we see it every day. Maybe it’s not something that we can readily point out to others, but every time we look into the mirror we see it: the look in our eyes that’s a testament to what we’ve been through and what we’ve overcome. We see the battles fought, won and lost. We see the days that have been taken from us and we our thankful for the ones that have not.
Continue reading

Visible hope

This week has been named National Invisible Chronic Illness Awareness Week. I think WEGO Health explains it well: “September 10-16th is Invisible Illness Week – a week centered around the idea that, just because others can’t see it – doesn’t mean your experience, your pain, your reality isn’t exactly that: real. This year’s theme is ‘Invisible Illness? Share Your Visible Hope!'”

I have dealt with this for a long time. If you feel generally down for as long as I did, you learn how to hide it pretty well. I still had my times where others could tell I was run down, but I don’t think many realized how difficult it was to hold it together day-after-day. My bar for feeling good was so low that even I didn’t always realize just how bad I actually felt.

It’s so important for people to realize that just because someone may not look like they are going through a hard time, doesn’t mean that they’re exaggerating the way they feel. It’s difficult enough dealing with the symptoms without having to justify not being able to take part in every activity.

This week presents a great opportunity to shed light on the pain and difficulties that live in the shadows and I hope to be able to be a part of it.