I hate pictures of being sick

I really do hate them. And that’s why I don’t have any. There has been more than one occasion where I have dropped 25+ pounds and have looked more like a skeleton than a human being. I have written on here before how when I was 13, I said to my mom, “At least I won’t need a Halloween mask this year.” My hair has fallen out in clumps and grown back unevenly. I have been on steroids that made my face swell up like a chipmunk. My knees and ankles have grown to the size of grapefruit. I have gotten large, bruise-like welts up and down my legs. But I don’t have pictures of any of these things. I would never allow any to be taken.

stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy sick illness hospital diseaseLooking back now, there are times that I regret that. For one, it’s an important reminder of what I’ve been through. I may never be able to remember exactly what I was like to be at the lowest points in my life, and while it’s not something I would want to dwell on, it is something that is important not to forget. But even more so, I regret not having pictures on days like today… On World IBD Day. Today is a day for raising awareness and tell our stories, but I will never be able to tell the full extent of my story. No one else will ever see the ugliest side of Crohn’s and how deeply it has impacted me. No one may ever be able to understand how sick I was in those most difficult days.

My point is not at all to make anyone feel sorry for me or be a part of the “Who has it the hardest?” game. My point is show that Crohn’s disease and ulcerative colitis are so much more than most people think. It goes so much deeper and hurts so much harder and slowly steals from you so much more than the world around us thinks. And I find that really sad. I find it sad that so many people who have had it even harder than myself, have gone through multiple surgeries and hospitalizations and blood transfusions and poisonous medications, and the rest of world has brushed them aside as dealing with a “stomach-ache.”

In one way or another, Crohn’s disease has affected every single part of my body. It has swelled my joints, deprived my internal organs of blood flow, affected my skin, hair, eyes, mouth and, perhaps more than anything, my mind. It has brought me to depression and anxiety and tension. It has told me I am ugly and weak and disgusting and not good enough. It has tried to take everything from my, and at times, I thought it might succeed.

I consider myself very blessed to be living now without medication and without symptoms, but there are so many others out there who have not made it there. There are others who are dealing with these painful and embarrassing symptoms every single day, as we sit and wait for a cure; as we push for awareness and support to find that cure. These diseases are serious and deserve the respect that a chronic illness necessitates.

This is why I wish that I had not been concerned with how I looked and I had allowed those pictures to be taken… because only in showing the world how low Crohn’s disease and ulcerative colitis can take a person, can we ever hope to bring about understanding. While I hate to see more and more people being diagnosed with inflammatory bowel disease, I long for the day where IBD is known and understood, because with that knowledge and understanding will come the support necessary to find a cure.

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