Health Activist Writer’s Month Challenge (HAWMC): 5 things I want you to know

HAWMC_2012_slider_2-resized-600For the first post of the HAWMC, let’s kick things off with a list of  5 things I want others to know about Crohn’s Disease:

1) Crohn’s is an autoimmune disorder in which the body essentially interprets its own digestive system as the enemy (foreign invader, etc.). Crohn’s flares occur when the body launches an attack against itself in efforts to fight the invader off.

2) Although everyone has a digestive system, not everyone is excited to discuss the details of it’s functioning. A lot of people (myself included) prefer to keep even non-embarrassing problems to ourselves. Thus, IBD can be an extremely isolating condition to live with. Thankfully, there are hundreds (maybe thousands) of blogs and forums online that allow for connections, support and relating to other’s stories in a way that was unheard of 10-15 years ago. I will always remember the first time I read a stranger’s account of the “alien baby” moving around in their stomach and realized I was not alone. The power of connection is one of the greatest healing powers there is.

3) To my knowledge, there is no proof that stress or diet causes Crohn’s disease. Stress is believed to exacerbate existing symptoms, as can a diet with trigger foods. This is an important distinction to make.  Stress management, diet and exercise are keys to thriving, but do not guarantee protection from an active flare.

4) There is no one diet that can really be recommended for all Crohn’s patients. We are all different and what triggers one person may be fine for another.   If you are a friend or family member attempting to understand or support a loved one, please do not assume that your one google search is more credible than their personal experiences and endless rounds of trial and error.  If something is going to make us feel awful, chances are, we know it and do our best to steer clear of it already. If you must comment about our food choices, please keep it positive. Appreciate and celebrate the fact that we can eat and enjoy. This kind of support helps more than a visit from the diet police ever could.

5) It’s really difficult to decide on a final point. I guess I’ll talk about the impact of Crohn’s on  body image and weight, since it hits close to home. Active flares can result in disordered eating, but this should be understood in context. When I lived for weeks on a liquid diet, it wasn’t because I wanted to lose weight. It was from a need to avoid excruciating, hellish pain. For some unknown reason, the general public finds it acceptable to comment on rapid weight loss on one of 3 ways:

  • 1) gushing congratulations on how hot you’re looking -these commenters are seemingly oblivious to the pale complexion, dark circles, chronic fatigue and other indications of poor health.
  • 2) wide eyed concern and statements of alarm of how quickly you’re wasting away – often accompanied with demands to “go eat something!” as if that were an actual possibility.
  • and 3) whispered gossip between friends, rumors of eating disorders and tsk-tsk-ing, as if that were in any way helpful.

Maintaining a healthy self concept is difficult enough when it feels like your own body is trying to kill you. Weeding through the comments – keeping what’s helpful and tossing the rest, takes more energy than a sick person is likely to have. Please, please think twice when commenting on someone’s appearance when you see a drastic change. Pretending to ignore it when it’s in your face isn’t the best option, but it’s better than making alarmist remarks of any kind. When in doubt, inquire, but be gentle and exercise tact. Show concern, be empathetic and above all, offer hope and encouragement for better days to come.

Last but not least, it seems fitting to issue a thank you to those of you who have followed a Chronie’s journey with empathy and compassion. Thank you for reserving judgment on days when we’re clearly tired and off-balance.  Thank you for keeping the faith when we can’t see the sun through the clouds.  In my opinion, having a kick-ass support system is the #1 secret weapon for navigating the recovery process. For those of you on my team, let’s face it. We rock! 😉



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