Thursday, February 28, 2013

Things I've Learned About Health and Diseases.

Ok so, I know that I generally want this blog to be a little more lighthearted, but my post today is more serious because I really have something on my mind and heart. It's about health.

My entire life I've struggled with a disease called Ulcerative Colitis. Because it's a hidden illness, many people haven't understood when I haven't  felt "up to par" or have been stuck in bed with no visible signs of illness (fever, throwing up, etc.). I kept my disease private for many years because of the fear of being rejected, misunderstood, or ridiculed. When I was in college, a friend of mine with the same disease was not afraid to share with others what she had, and I was really envious of her bravery. I decided, in time, to do the same. I wrote a post in 2009 talking publicly about having UC, and have felt a lot more free since then. I have still run into people not understanding what my disease means and what the effects are, and that has been difficult. My awesome friends, family, and my hubby are incredibly understanding and helpful though, and that's all that matters. 

One thing I'm really frustrated with though is the fact that many, many people that I have come across do not accept diseases that they don't know, don't understand, or can't see the physical affects of it. They are either ignorant or hard-hearted (sometimes it's hard to gauge which one it is), and it's hurtful and terribly aggravating. So, here's what I want to do. I'm going to give a list of things I have learned about health and illnesses, and if it helps just one person accept hidden diseases more readily, then I will be perfectly happy with that. 

1. Never, ever judge a disease based on someone's appearance.
This may sound like a no-brainer, but it is really surprising how many people see the way someone looks (if they "look" sick or not), and try to judge their health based on that. My entire life I've "looked" fairly healthy. I'm not overweight or underweight, I don't have bags under my eyes, my pale skin is due to my genetics and not my health, etc. When I started telling people that I have Ulcerative Colitis, many of them were shocked because I look like a "normal" person. One of my sisters has had Fibromyalgia most of her life, and people would never guess that it's something that causes her tremendous pain in her everyday life because it's not "visible."

2. If someone tells you they're in pain, not doing well, etc., do not automatically assume they're being dramatic. Give them the benefit of the doubt.
Even though I have a hidden illness, giving someone the benefit of the doubt is something that I have struggled with in the past. I used to have a hard time not thinking that when someone says they're really sick or in a lot of pain that they're just full of it and exaggerating what's really going on. However, the way I approach people when they tell me what's going on has changed because I know how it feels not to be believed and to feel judged for expressing what's going on. It sucks, you guys. It really, really sucks. I'm sure I could have put that more eloquently, but I cannot tell you how invalidating and small it makes me feel when I tell someone how I'm feeling and they look at me as if I'm lying or just dramatizing things. I may not struggle with my UC nearly as much as most other people with this disease, but what many people don't realize is that the medication I take for it lowers my immune system, which means that I am more easily fatigued and I get sick easier. When I am sick, I am sicker than most people and for a longer amount of time. I cannot tell you how many times people have thought I have just dragged an illness out for attention, to get out of work, etc. But that has never been the case. Trust me, I would love to be healthier and more free to do the things I want to do. Being sick is definitely not what I would prefer.

3. Never try to downplay what the person is feeling.
What I mean here is when someone tells you they're struggling, their disease is flaring, etc., do not tell them "Oh, you'll be fine." Or, "Well, if it's that big of a deal, why aren't you in the hospital?" Or, "Just don't think about it." The only thing I think of when I'm told these things is, "Really? You don't think I've tried not to think about it? You don't think I've tried to continue doing things normally?" People think that going to the hospital should just be an easy decision. Unfortunately, when money and insurance is involved and you're not sure how serious the flare-up or problem is, it can be incredibly confusing whether or not a trip to the hospital is necessary.

And finally...

If someone who is ill feels unsupported or not cared for by those around them, it can be very debilitating emotionally and even affect how they feel physically. I can point to times in the past when I have physically felt worse or better depending on the people around me. If I feel supported, I feel as though I can get through anything. If I feel like I'm just being judged, I want nothing more than to be out of that situation and I often just try to forget about my health (which can be the worst thing possible).

At the moment I'm struggling with the possibility of gall stones and I might need to have my gall bladder out. I've been supported by most people, and felt unsupported by others. While getting my gall bladder out won't be a huge deal, when I'm around those who support me and genuinely want the best for me, I feel like I want to do everything I can in order to get better and figure out what's going on. Those who don't support me... I feel like I need to do what will make them happy instead of what's going to be healthier for me. The same is true (and even more important) for those with long-standing and chronic illnesses. Support is paramount. It's amazing how someone's emotional health can really be a factor in their physical health.

So there they are. Four things I've learned from my experience in dealing with people who don't understand chronic and hidden illnesses. If more people can be less judgmental and more supportive, I think it would go a long way and people with illnesses will feel much less like outcasts and more cared for and accepted by their peers. After all, don't we want to love the people around us in the best way possible? What's stopping us from being supportive? Whether you're a friend, family member, spouse, coworker, neighbor, you have the ability to support those people in  your life who struggle with chronic illnesses. All it takes is a little less selfishness and a little more understanding.



  1. Very well written! I "hide" how I feel a lot and to look at me, one wouldn't know that I am in constant pain due to fibromyalgia.
    You may only be 23, but you are a very mature and intelligent woman. :)
    I enjoyed your blog.

  2. Thank you for this! I struggled with things like this for a long time. It was only recently that I discovered I have Cytomegalovirus (CMV). It never goes away, I always have it, it just gets better or worse. There's not really any meds for it. But basically, it's like having chronic mono. The last bout was about two weeks long. The time before that was 14months long. I literally slept 10-15 hours every day. The fatigue was overwhelming.
    Your post was so encouraging! I had no idea you were going through this.

  3. I really appreciate this post Bethany! I'm so thankful that you are addressing this topic, and doing it so well! Thanks for writing! - Kathryn

  4. Thanks for writing this :) I read this when you posted it on Facebook originally, and I was kind of in the midst of not feeling well and not knowing why. Reading it then, I was enlightened and felt more like an outsider. I just came across it again tonight, and since reading it last, I have been diagnosed with mild Crohn's. While I was glad to have a diagnosis, & to no longer have to wonder what was going on, it was upsetting, despite the mildness of it. I'm still getting used to it, & still trying to get things under control. It's something that affects me every day, and I can't really do anything about that. Reading this tonight has struck a chord of familiarity with me-- I understand, although not to the extent that you have experienced, what it feels like to not "look sick," and yet feel awful. I'm still learning how to say, "No." I'm still learning how to make sure that my health comes first. It's hard, because other people just don't get it. It really is wonderful to have such a wonderful support system in my family, and especially, in my husband. Thanks for putting to words how I have felt in the past few weeks, and know that you have been & continue to be in my prayers. :)


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