Anyone Else Frustrated with People?

Introduction:

I am a Pilates Instructor and a Yoga enthusiasts residing in Austin, TX. I have had symptoms since 2005 and a colonoscope in 2006. I mostly suffer from constipation with UC.

Some more about Ashley:

I have a plethora of pets that demand to be taken to the park every weekend rain or shine. I enjoy looking up funny YouTube videos and budgeting my check book.

Symptoms:

Bleeding, fatigue, frequent urgency, & constipation.

Anyone Else Frustrated with People?

I have been diagnosed with UC for 9 years. I first had symptoms right after high school at age nine-teen, I lived in a small town and the local doctor seemed horrified That I was a young girl with a bleeding colon. In fact, for most of my life after I have been diagnosed with UC doctors just seem either confused, unsympathetic or both. Acupuncture and Chinese herbs really changed my disease for the better, and I am so lucky to have found it. Acupuncture has helped me with my stress around UC. I have been known to freak out or get really depressed when I have a flare up. My flare ups could be constipation for weeks at a time or leaking of the gut, urgency and bleeding the next. After nine years I still have a very hard time with a somewhat restricted diet, limiting sugar, caffeine, raw veggies, gluten, dairy and alcohol, which ALL make me susceptible to a flare up. I do still feel like a goody two shoes freak when I have to deny myself the si mple pleasures of pizza and beer while friends are enjoying, but I am working on coming to terms with the cards I have been dealt. In truth, I’m really going to be better off in the long run without out a dirty liver. But for now, it is very hard because I have had such a love affair with food.

My question to ya’ll:

How do you deal with people who don’t understand UC. My family honestly thinks it’s just a stomach ache even though I have had a colonoscopy to prove my disease? I don’t know the proper tools to educate people and I usually just get so frustrated when asked ignorant questions, I just change the subject!

written by Ashley W

Hey Ashley, this picture of me was taken in Austin Texas down at the river back in April 2013!

Hey Ashley, this picture of me was taken in Austin Texas down at the river back in April 2013!

Ask Adam

“Will I get an e-mail when my story is posted on the site?”

Hey Ashley,

Yes.

After someone submits a story to the website through the link for writing your story, I receive an email with all the information that you fill out.  Once I get the story posted, I always send an email to the writer letting you know your story is up.

ALSO, because your story is attached to your account that I also setup, there is a connection with your email address.  Even though nobody who uses the website besides me knows your email address, the site is super smart, and it will also email you anytime someone posts a comment to your story.  Make sense?:)

Thanks for sharing Ashley!

-Adam





13 Responses to “Anyone Else Frustrated with People?”

  1. JoanMarch 8, 2014 at 6:12 am #

    Hi Ashley:
    I understand completly where you are coming from with “people” not understanding this disease. It’s really hard to get, I couldn’t get it myself for years and sometimes I still don’t and I’ve had it for 14 years. People think that if you just stop eating a particular food that your issues will subside. They just don’t get it and they won’t understand

  2. Sarah A
    SarahMarch 8, 2014 at 7:22 am #

    Hi Ashley,
    I’m so sorry that you’ve been going through this for so long. For me it’s been 7 months and counting, and while I’m better, I’m not back to normal. Maybe this is the new normal, who knows. And yes, I completely empathize with you regarding people’s confusion and lack of sympathy surrounding UC. Some people have even said, after I’ve given them the “UC in summary” brief, that “Oh, I have that too.” But when they describe it, it’s indigestion or something else I’d gladly trade them for. Sigh. I’ve started sending links to family and friends, such as this really informative (but simple) page from the CCFA: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/ Sometimes people just need to read it for themselves; I find that often, in their eyes, it legitimizes me. Of course some people will never get it, but all you can do is try and then let the rest roll off your back. Glad to hear that acupuncture helped your UC symptoms. I’ve just started that and have high hopes for its stress-reduction and disease-fighting benefits. It sounds like you have a good head on your shoulders. Stay strong, and I hope you see full remission soon!

  3. SherMarch 8, 2014 at 7:31 am #

    Hi Ashley,

    I can completely relate… After 13 years with this “disease” I still do not understand it :-) maybe it’s hard for others to understand an issue that is so complicated and different for each individual… Some days I wish I had something that was easy to explain and just take my meds and it would all be okay!

    My frustration comes when I call my doctors office for whatever reason and they take several days to call me back or worse yet several days to refill a med, it’s so frustrating and makes me wonder what “health” care is coming to!

    I also get more easily irritated with other people during a flare… They are just going on with their normal, healthy lives and I’m aggravated that I’m scoping out the nearest bathroom and they better walk faster, drive faster, stop talking etc. etc. … And get out the way!!!! Whew I think I may try your acupuncture out:-)
    Thanks for posting! Sher

    • Tracy PerkinsMarch 8, 2014 at 3:23 pm #

      Question. Anyone on Prednesone and have swollen feet ????

      • LoriMarch 18, 2014 at 9:39 am #

        Yes, I am currently on 60mg of Prednisone and my hands, feet and face are swollen.

  4. shelly in maineMarch 8, 2014 at 3:41 pm #

    Hi Ashley,
    Yeah..uh good luck with that! Adam actually has written a couple of stories of some positive outcomes of sharing. I, however, have a family riddled with IBD-UC and Crohn’s, and they don’t understand a thing nor are they sympathetic!! I am 45 and a lifer of UC..
    What you learn to do is explain it to people in general terms and those that care and want to know will ask more questions…those that don’t..well, c’est la vie! Adam’s book, I think is a great overview of UC and worth buying/reading and sharing and exposing people to. Plus he has his SCD cookbook which sounds like it could help you. I can go 10-15+ times and still have constipation issues, inflammation…remedy…Diet, understanding the difference between soluble and insoluble fiber, water, really not eating things you can’t pronounce, Smoothies, keeping a journal of food, meds…natural/Chinese are meds, too, with side effects, bm’s, etc.
    In the end…haha. :-) …you have to do what is best for you and not worry so much about others. Stay positive…what doesn’t kill you makes you stronger! :-)
    Best, Shelly

  5. Donna G
    Donna GMarch 8, 2014 at 5:21 pm #

    Yes, few people really understand, it is very frustrating. Some people never will get it. But there are some that do, I really appreciate and cherish those friendships. For years I felt some level of shame I guess, when I did tell someone it was with a feeling of something that I had done wrong, my personality or what I ate or how I managed stress, somehow I felt it was my fault. In fact the questions I was asked made me feel that way. Since I’ve learned to accept that it isn’t my fault it has helped me to share in more detail what it is like to live with a chronic illness and to field the ignorant questions in a more constructive way,

    Donna

  6. JulianMarch 8, 2014 at 5:39 pm #

    People who have not been touched by UC or any other disease will not want to care or listen.
    I recently created a group to support and educate people, I invited

  7. Tony (UK)March 8, 2014 at 5:57 pm #

    Fortunately most of my family now understand what UC is and how it affects a sufferers life, as for anyone else I rarely now bother to explain as the majority have never heard of it and aren’t all that interested and that includes many in the medical profession. If anything I just say I’ve got crohns and leave it at that as most people have heard of crohns even if they don’t understand it fully. Shame really because one should try to educate those who show interest but for me I got tired of speaking about the subject because I just want to get on with my life as best I can.

  8. Rosanne
    RosanneMarch 8, 2014 at 6:54 pm #

    It’s been 32 years and some people still think it is all mental! You cannot change them. It is something they can’t see so it isn’t real. If some big name celebrities or sports figures would step up and say they have UC or a family member has it…society would think different. Good luck! May every restroom you need to enter have an open stall, be clean and most important have toilet paper!

  9. Matt S.March 12, 2014 at 1:41 pm #

    I find it exceptionally hard to deal with this disease in the military. Soldiers do not like to be perceived as weak and we definitly fight to hide our symptoms from our buddies. When we do struggle and have to explain our issues we do not get any sort of understanding. My worst issue is when my arthritis acts up and I have to bow out of PT. I would rather deal with the bowel issues of UC then that damn arthritis.

  10. LoriMarch 17, 2014 at 9:34 pm #

    I too find myself increasingly frustrated by having to explain to people what is wrong with me. Especially when they say, “Oh I thought you would be over it by now.”
    Some think I’m doing it on purpose, that it’s all in my head, or it’s like having the flu and it will get better in a few day. Trying explaining to someone that I’ve had 15 bowel movements in one day and they look at you like you’re crazy. They also think it’s really not that bad. They don’t get that I’m exhausted all the time just from going to the bathroom. And when you tell them you bleed, it freaks them out. I was just diagnosed January 2014 and I’m already tired of talking about it.

  11. WendyMarch 25, 2014 at 9:57 am #

    I’ve struggled with this question for 12ish years. Thankfully, I’m in remission, (azathioprine). My response depends on the situation, my mood, and how well I know the person asking. If it is someone I love and they need to understand, then I take the time to discuss the disease, immune system response, IBD (differs from IBS…), ulcers inside my intestines, bleeding, painful, spasmodic colon, and definitely I use more gentle (read – less graphic) terms and adjectives. Other times, if I’m feeling like someone is challenging me or just not getting what I’m saying then I resort to: 30-40 urgent trips to the bathroom /day, just to get rid of blood & mucus, no stool; anemia, insomnia, and abdominal pain that would child birth look like a walk in the park. Honestly, I’ve found the second response helps people ‘get it’. I know, graphic. But hey, maybe they’ll learn something.

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