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We all have an invisible illness

Tomorrow starts off Invisible Illness week. As many of you may know, Crohn’s disease and ulcerative colitis are considered invisible illnesses because you can’t always tell what an individual is dealing with based on what is visible or how they look. The images I included in this post were all taken at times that I distinctly remember how bad I was feeling. You can tell in some of them more than others, but after living with a chronic illness for so many years, I have gotten pretty good and disguising how bad I may be feeling at times.

As I was thinking about Invisible Illness week, I was reminded of an interesting discussion we had at my ostomy support group a few months back. We talked a little about the thoughts that we all dealt with when we first knew we’d have to have surgery to get an ostomy and about the grief that is felt over the loss of a part of yourself. We finished up by discussing what we actually went through and how we made the decision to keep going. It wasn’t a lecture on what’s the right way to handle all of this, but simply a discussion of what we each had experienced.

At the meeting, a couple of people started talking about everything that they had been through and one guy listed off a dozen or so surgeries he had previously had for various reasons and finished by saying that he knows people who are much worse off. A lot of people starting chiming in about how somebody else always has it worse and that provided encouragement to keep going. I know that it is true that others have it worse than me. I fully admit that. On a regular basis I am faced with someone new who has been through so much that my surgeries and medications and hospitals stays and pain all seem very small. But I really don’t think that’s how we’re supposed to feel.

stephanie invisible illnessI think we (and by “we” I mean the patient/health community and maybe even society in general) have gotten too caught up in the “who’s got it worse?” game. First of all, there is absolutely no way that judge that and secondly, I don’t understand why we all feel the need to try to judge it. We attempt to categorize the level of awfulness that each person has to deal with when, in all honesty, we are in no position to make that kind of assessment.  Who’s to say that the person with the severe illness but a strong support system is any better or worse off than the person who has a mild illness and is all alone? All of our stories are so complex and interwoven into so many aspects of our lives that, unless we are in that position, we can never know what it’s like.

There is definitely a certain level of understanding that is present amongst people with the same diagnosis and even in people who are living with very different issues, but can understand chronic illness in general. But there can never be a complete understanding of another person’s journey. Symptoms that are simple for one person to deal with may send another person into a deep depression. I know it’s hard, but I think we need to stop comparing ourselves to everyone else and start seeing what we all really have in common. Part of what I love about being involved in the IBD & ostomy community is that I feel like we all see each other for what we have in common and that creates an intimate bond between us all. But even for those who are not living with Crohn’s disease or ulcerative colitis, chances are they also have something they are dealing with and learning to live with. Just because we don’t know what it is doesn’t mean it isn’t there.

We all have some sort of invisible “illness,” regardless of whether or not it is actually classified as an illness in the true sense of the word. We all have some sort of cross to bear that helps define who we are. It could be a diagnosable disease or an anxiety disorder or a troubled marriage or difficulty making friends. We all have something that we must try to overcome in this life. And whatever it is may be visible to others or may stay hidden, but that doesn’t mean it isn’t there. So regardless of whether you are living with an illness or dealing with some other difficulty in life, I encourage you to not think about who has it worse, but rather to remember what we all have in common.

Fighting the fight

Andrew’s story

When I was first diagnosed with Crohn’s in 2007, I wasn’t worried. Maybe it was the “always fight for what you want” mentality I was raised with. Maybe I felt like I had an advantage as I was dating a really cool nurse at the time (my now-wife, by the way). Maybe it was ignorance. In hindsight, “all of the above” would be the best answer. Regardless, I would fight.

My diagnosis came during my freshman year. I was a Music Education major and a member of the ECU Drum Line. I was taking more classes than I could manage and spending every waking moment occupied with music, sports and having fun. Life was a bit stressful, but extremely enjoyable. I was able to maintain my symptoms for a few years. I fought.

Things suddenly changed in the summer of 2011. I had a sharp pain in my abdomen that caused me to miss a week of work. I had lost 20 pounds within 2 weeks and I had no idea why. My medicines didn’t change, my diet wasn’t altered, I was still inconsistently active. My now-wife and I couldn’t afford the expensive biologic treatments that were recommended, so I started on a combination of Tramadol and Dicyclomine. This helped for a short amount of time, but I knew taking painkillers just to get through a normal day was in no way a long-term fix. I adjusted to what would be my new “normal” and continued the fight.

Fast-forward 18 months – I had graduated and gotten married. Everything seemed like it had changed, except for the hell I was going through with my disease. At this point, I had already failed Cimzia and decided to switch doctors. I began Remicade treatments and felt better for a few months, until I slipped back to reality. Next it was Humira, paired with Mercaptopurine. Again, I felt great for a few months until I fell back to “normal”. I was still fighting.

Andrew-Boyd-hospital-ostomyI learned at that time that everyone has a breaking point. Just like in battle, you get to a point where you are tired of the status quo for fear of losing. Up until this point, I didn’t think I could lose. I was fed up and tired of just maintaining the current symptoms. I wanted better. I wanted the pain to be over.

I still remember the day I decided to go through with the surgery. It was January 2014. If I wasn’t firmly planted in the real world before, I definitely was at that point. I had obtained licenses for work as a Financial Advisor, had purchased a new home and truck the previous summer, and had a new puppy. I was tired of what I thought was my “normal”. I was tired of having to know where every single restroom was in every place we would go. I was tired of being limited as to what I could eat and having it dictate where I could eat. I was literally tired of being malnourished and watching family and friends be able to enjoy activities that would leave me exhausted.
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Walk a day in my shoes, I mean ostomy bag…

It really makes me happy to hear about new ostomy awareness events. And there is a really awesome one coming up in just a couple of weeks. The first WannaWearOne Ostomy AWEARness 5k is happening right here in North Carolina! It’ll be on October 4 to coincide with World Ostomy Day.

One very unique part of this race is that ostomy bags are going to be given away as part of the race swag. It’s also an optional part of the run for those who do not have an ostomy to wear the bag! What I find really funny is, to top it off, they will have things like applesauce and pudding to fill the pouches to get a little better feel for what it’s like to wear an ostomy bag.

Wannawearone ostomy 5k race awareness stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog race run

And while I am so excited that this event is happening, it absolutely breaks my heart that I will not be able to run in it. It happens to land on the same day as a family member’s wedding that is out-of-state and has been planned since before this race was announced. But I did the next best thing and I have signed up for the Virtual Race! Basically, for anyone who cannot make it to North Carolina on race day, you can sign up to be a part of it virtually and run your own 5K and raise awareness and funds on your own.

It’s really exciting to see the word getting out there and I hope that this is the start of many of these type of events in the future. And I can say this, I will make sure to go ahead and put next year’s race on my calendar and I will be one of the first ones getting involved!

But for all of you, now go sign up! Especially if you’re in the Raleigh-Durham area or can make it out here for the race. I think it’s going to be a really great event because I know some awesome people are heading it up. But otherwise, sign up for the virtual run and we’ll all “get together” for a 5K that morning. And in the meantime, spread the word online by using #WannaWearOne!

The best part of chronic illness

I wrote last week about the hardest part of living with a chronic illness, and in doing that, I started thinking about some of the good things that have happened, too. I thought about how well I know myself and my body and how I’ve learned to pay more attention to my health. I thought about how much I have enjoyed all of the good days and learned to live them to the fullest after experiencing the bad days. I thought about how thankful I am for all of the great things I have in my life. But mostly, I thought about all of the amazing, incredible, strong, inspiring people I have met along the way.

Crohn’s disease has changed my life. Having an ostomy has changed my life. I can never regret them because I honestly don’t know who I would be without them. They are ingrained into my identity and the person I have become. Living with them has brought me to exactly the spot where I am right now. And you know what? I am totally fine with that. While things are far from perfect in my world, I am so thankful for the people in my life and all of the things that I have been able to accomplish and be a part of over the past 28 years.

I lived for 13 years without really ever knowing anybody else who had been through the same thing as I had. I learned to accept the loneliness and hide what I was feeling really well. But once I started speaking about it, I found a whole new world of acceptance and inspiration. I have formed bonds different from any I have ever known. I have made friends who I hope will remain friends forever. And that’s the best part of living with chronic illness.

That chronic illness makes you different. It makes you experience the world in a way that others who have not dealt with chronic illness could never understand. And it can make you feel like an outsider. It can make you feel alone.

But finding a community of people who know what you’ve been through and have walked in your same shoes… it’s an incredibly freeing feeling. I think one of the things we strive for most in this world is to be understood. Some people search for that their whole lives. I consider myself pretty lucky to have found it.

These people… These people make living with a chronic disease worth it.

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