A Skeptic’s Journey With Chronic Illness

Although she’s very young, Ania Bula has dealt with Psoriatic Arthritis and Crohn’s Disease. With those illnesses come a host of people who think they have a quick cure:

Chronic illness is an invitation for everyone to comment: either with regards to a cause, a treatment, or otherwise. Suddenly, everyone’s aunt is an expert and everyone’s fad diet a cure. You wade through a constant stream of ignorance and lies, in a desperate attempt to find peace and a stop to pain. In my years living with both disorders I have been faith healed, poked, prodded, stuffed with powders and magic potions, and now is my opportunity to tell everyone about it.

Now, Bula is writing a book about her experiences dealing with both the diseases and the responses to them: Young, Sick and Invisible: A Skeptic’s Journey With Chronic Illness. She’s raising funds through IndieGogo, so check out the page and fund her project if you like what she has to offer!

About Hemant Mehta

Hemant Mehta is the editor of Friendly Atheist, appears on the Atheist Voice channel on YouTube, and co-hosts the uniquely-named Friendly Atheist Podcast. You can read much more about him here.

  • http://twitter.com/nicoleintrovert Nicole Introvert

    I am excited to support this project and read her book when it comes out!

    If anyone is interested in evidence based peer support I created a “Skeptical Spoonies” group on Facebook for people struggling with any chronic illness (it was named based on the “Spoon Theory” but is open to even those who don’t have to ration spoons.) http://www.facebook.com/groups/387307311351023/

  • http://atheistlutheran.blogspot.com/ MargueriteF

    Good luck to her. I have Crohn’s too, and get furious about people offering “cures,” or asking why you haven’t tried so-and-so because they had a friend who did it and it worked for THEM, so obviously it’ll work for everyone. I ranted at length on my blog the other day about a Fox News headline that said, CURING CROHN’S? MAN SAYS HE FOUND WAY TO BEAT INCURABLE DISEASE, when in fact his “cure” was a mixture of the usual (weird supplements, eating a specific diet, yoga, and harder exercise). He claimed to know “how to handle it” if it ever recurred, but his doctor was actually quoted in the article as saying his “cure” was a result of taking 6MP, and might not last. I guess everyone wants to think they’ve found a way to beat something that thus far can’t be beaten, but it’s really infuriating when people tell you that faith in God, or yoga, or some particular supplement will solve the problem.

    Grrrr. And see, I’ve ranted at length yet again. It’s no wonder she needs to write a book– there’s a lot to say on the topic!

  • http://www.facebook.com/nicole.wallace.39 Nicole Wallace

    I have Crohn’s and Fibromyalgia. My mother’s told me that god will cure me, my friends have pushed gluten-free diets, dairy-free and fad diets. I understand. I cannot help this young lady with funds, but she has my full support and well wishing.

  • http://www.facebook.com/nicole.wallace.39 Nicole Wallace

    I’m going to look at your group. It sounds wonderful!

  • http://twitter.com/nicoleintrovert Nicole Introvert

    I have Fibromyalgia. I know all about the pushing of fad diets… especially gluten free! It keeps getting worse. Hope you stop by the group!

  • http://twitter.com/DearAnia Ania Bula

    This young lady is very glad to have your well wishes and support. Thanks. :)

    If you can’t help financially, I could really use help in the form of promotion. You would be doing me a huge favour by sharing info about this project on your facebook page, twitter, etc.

    Either way, I appreciate the kind words very much.

  • http://twitter.com/DearAnia Ania Bula

    Thanks for letting me know about this group. It sounds great!

  • http://twitter.com/DearAnia Ania Bula

    That was exactly my thought.

    Also, that fox news article was posted as a discussion piece by the Crohns and colitis foundation, much to the disapproval of skeptics everywhere.

    It was under the guise of promoting discussion.

  • SeekerLancer

    As an atheist and skeptic who also deals with chronic illness I can relate. Everyone seems to have the secret answer to your problems. It mostly just highlights how eager some people are to take advantage of the suffering who will try anything to make their lives more livable.

    I thought about writing a book myself but it seems like I’ve been beaten to the punch ;).

  • http://www.flickr.com/photos/chidy/ chicago dyke

    healing is different for everyone. no two human bodies (other than twins) are exactly alike, and even twins have different experiences as they live and age and are exposed to stuff that causes disease.

    i don’t bash people who use whatever they believe works for them, even as i think most of the time medical science is the best way for most people to find relief. at the same time, i remind people that drugs are a billions dollar industry in this country, and Big Pharma is more interested in selling them, than curing people who won’t need to buy drugs anymore after they’re cured. there’s been a significant amount of investigative journalism on this front and i encourage people to be aware of it.

    i guess what i’m saying (and i don’t have a chronic disease) is that reason and science leave the door open to a lot of things to treat pain and disfunction. i don’t think it’s right to mock people who incorporate things into their treatment regimen if those things work for them, personally. ymmv.

    …adding, i am pretty firm about “faith healing” and not seeing doctors at all, in the case of sick children. that is utterly wrong and should be illegal.

  • JohnnieCanuck

    It’s my suspicion that Big Pharma is exceeded in cash flow by its competition, Big CAM.

    Just look at how much space on a drug store’s shelves is taken up by herbal supplements, megavitamins, etc. Somehow the finger pointing at the prescription drug companies completely obscures the three pointing back at the pushers of untested remedies with uncontrolled quantities of compounds of uncertain efficacy and unknown side effects.

    And yet, what sticks in my mind is seeing a copper bracelet with embedded magnets displayed by the pharmacy’s till at the prescription counter. Only thing it’ll cure is a fat wallet.

  • Adam Casto

    My wife was diagnosed with multiple sclerosis at the age of 29 just a few years after losing her dad to it. He was only 54. So far the meds aren’t working for her. Living in the South I’m all too familiar with the sentiment. I’ve learned to ignore the vast majority of it, but sometimes it can be tough.

  • Sergio Castro

    I realize this is anecdotal, but in seeking treatment for sciatica from a herniated disc, the doctors were very interested in fixing me, not just prescribing meds to cover the pain. They were, in fact, reluctant to prescribe narcotics and did so only after a year of other failed treatment attempts, and I had to pass a psych eval too. The pain meds have reduceed my pain 80-100%. I have a life again! I would never refuse pain medication…But I would demand a diagnosis, a path forward, and many attempts to fix the problem rather than just take drugs forever. In my case, drugs were the best treatment. The disc will shrink in time and the sciatica will go away. In the meantime, I am mostly pain-free. Thank you Big Pharma!

  • ConureDelSol

    You have NO idea how awesome this is. I have Behcet’s Disease and a missing intrinsic factor (basically I’m super exhausted all the time). I’m a member of 3 different groups focusing on the disease and EVERY SINGLE ONE is chock full of fundies. My feed has been spammed full of prayers and whatnot. I’ve always felt a little alienated there because I couldn’t talk about my disease without someone bringing up religious babble or “encouraging” Bible verses.

    So basically, I’m joining the shit out this.

  • ConureDelSol

    Her blog, for the record is here: http://www.aniasworkinprogress.com/