Tuesday, September 21, 2010

30 Things About My Invisible Illness You May Not Know - by Mom

Mom is taking over the blog today:

I want to thank @Wildboutbirds, Honeybell's, mom for giving me the courage to write this. this is her blog about hidden illnesses: Hidden illnesses affect how we percieve things, and I believe our twitter friends know when something is wrong. We all have things to deal with, but sometimes it is hard to know what a disease is like if you have never met anyone with it. Please ask me questions about celiac disease and I will be glad to answer them to my ability.

1. The illness I live with is: celiac disease. I was undiagnosed for so long that I have other food sensitivities such as dairy and soy. Celiac disease has also impacted my thyroid function and I have hypothyroidism. Of course, depression often runs with this disease for many reasons. I am also a recovering alcoholic.
2. I was diagnosed with celiac disease in 2006.
3. But I had symptoms since I was a child.
4. The biggest adjustment I’ve had to make is figuring out how to eat in our fast paced culture.
5. Most people assume that all I have to do is not eat bread. AND the big one, that there is medication for this (medications are still in R&D).
6. The hardest part about mornings is trying to find something to eat that is not bread, wheat cereal, oatmeal, or cholesterol containing.
7. My favorite medical TV show is House mainly because he is such a curmudgeon. However, they have had an episode about celiac disease.
8. A gadget I couldn’t live without are silicone cooking utensils.
9. The hardest part about nights is depression, wondering how I can continue to cook my meals when I am elderly, wondering if the food experiment will make me sick, hating myself for being fat but not sure what I can give up to lose weight. Luckily, I have no desire to drink, so that isn’t an issue.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments, I would love to find one, but this is all food modification. There is no magic pill to make me better.
12. If I had to choose between an invisible illness or visible I would choose visible. People can understand a limp.
13. Regarding working and career, it is very difficult as a professional to dine out with colleagues. I have to ask the waiter in detail about food preparation, and I just sound picky. Sometimes after a contamination, I need to sleep for hours. You can’t say to your boss, I need to sleep to help my body recover from a hidden illness. People don’t get it. If you aren’t throwing up, it doesn’t exist.
14. People would be surprised to know that wheat in the forms of flour or gluten is hidden in many foods. My food also has to be produced in a wheat free environment, and most restaurant kitchens are not set up this way. When wheat is accidentally consumed, we call that contamination. Only time and strict adherence to a gluten free diet will heal.
15. The hardest thing to accept about my new reality has been to figure out that no matter how much you change yourself for the better, something will always come up and grab you in the ass to give you a reality check.
16. Something I never thought I could do with my illness is to resist cinnamon rolls.
17. The commercials about my illness- since there are no celiac disease commercials, the depression ones make me annoyed as hell.
18. Something I really miss doing since I was diagnosed is eating a sandwich whenever I want wherever I am.
19. It was really hard to have to give up cheese due to lactose intolerance.
20. A new hobby I have taken up since my diagnosis is changing the type of cookbooks that I read.
21. If I could have one day of feeling normal again I would order a fantastic meal at a 5 star place, no wine though.
22. My illness has taught me that you have to be advocate for yourself with the medical profession. If you don’t tell them in their vocabulary, they are less likely to hear you.
23. Want to know a secret? One thing people say that gets under my skin is, “Oh, you can just have a salad. That’s safe.”
24. But I love it when people find a restaurant that is gluten free friendly especially for me.
25. My favorite motto, scripture, quote that gets me through tough times is from a Steely Dan song:
Any major dude with half a heart surely will tell you my friend
Any minor world that breaks apart falls together again
When the demon is at your door
In the morning it won't be there no more
Any major dude will tell you
26. When someone is diagnosed I’d like to tell them that this disease ain’t for the faint of heart.
27. Something that has surprised me about living with an illness is people don’t care.
28. The nicest thing someone did for me when I wasn’t feeling well was the day my husband made a special trip for a white soda.
29. I’m involved with Invisible Illness Week because, well, I’m a day late, but I needed to get out my feelings.
30. The fact that you read this list makes me feel that you have taken the time to care, and that means the world to me.


  1. Thanks for posting this and bringing attention to an invisible illness. It helps to spread understanding!

  2. My family still denies that lactose intolerance is even real. Their thing is that getting diarreah now and then is a good thing, that it rinses out the system. If they only knew the pain that comes with it, how it hurts thousands of times worse than PMS cramps, and how it's so hard to stop the pain, they wouldn't think that anymore. And yes there's pills. But they're not fully effective, and sometimes near ineffective! So I have to agree with you - I'd rather have a limp than have what I DO have. I can't imagine having Celiac though. My heart goes out to you.


  3. Thanks for posting. My friend just found out her 1 yr old has celiac. Luckily, in the past few years, many NYC restaurants have opened up specifically for ppl with this invisible disease and the papers now print recipes. TW used to be lactose intolerant but she gradually introduced diary into her diet and now she can tolerate even small amounts of ice cream. She does get mad that she has to consume or throw out lactose-free milk in 7 days. Healing purayers and purrz.

  4. You are our fwiend and we lub U just as U are! We support U in UR journey and will encourage U in UR successes and be here to lub U thru the set backs.

    This disease, like other seemingly non-debilitating diseases, is hard for others to see and therefore show understand and have compassion!

    Invisible disease week is pawesome - we support it! We often get involved with mental health programs and we'll also include you in our thoughts and contributions!


  5. Thanks for sharing this. I can't even begin to imagine how difficult this is for you. As you said, if ppl can't see it, then they just don't think it exists or is a "real" illness. I suffer from depression myself so I can really empathize with you. When we've talked in the past abt the various things you can and can't eat I've always been really impressed that you have it all under control the way you do. I know it isn't easy, but I hope you're proud of yourself. You should be.

  6. Mom's mom had celiac disease and was lactose intolerant. Shopping and cooking was very difficult at first. More stores here are carrying stuff for people with celiac disease, so it got easier over time. Wild Oats (I don't know if you have that store) had the best selection of products.

    It's a shame some people are so narrow minded. Celiac disease is real and it's difficult to live with. Just know you have friends out here who are willing to listen whenever you need to talk. We understand and we care, and we're here for you. *purrs & hugs*

  7. Thank you for sharing this with us; I have to say that #27 has me very sad; if at least 1 friend or companion cares, that is caring; I care so now, that makes 2! I am sure ppl care about you; You are a treasure and deserve happiness. I live with husband who has severe BP2 and mood disorders; I know the sadness that you speak of. My brother is a recovering alcoholic and has celiac as well; It is one day at a time, for sure; I love that you wrote this and hope that it has helped you and others. Thank you!
    your friend,
    nina and HB

  8. I can't say it as well az Herbie, but thanks you for a intresting letter abowts invisibul illness week Maggie's mom

  9. Excellent post dear friend. I've known about you're battle with celiac disease, as you shared it with me in some tweets. I'm happy you are open about it. I did not know about some of your other battles tho, but understand the weight one completely because I've always had a weight problem, and can relate to the drinking problem too because of having it in the family. None of them are easy to deal with. You are right - the hidden diseases are so well hidden, that most of us don't know you have them until it's shared. We sometimes probably seem insensitive without knowing we are being insensitive. My heart goes out to you and all the others who suffer hidden diseases. Mario & I love you and really appreciate having you as a special friend. HUGS. Mary & Mario

  10. Thank you posting this. It took great courage and patience. I didn't know all of that about celiac disease. I am also overweight and suffer from depression. I have a hidden disease too. Many of you know that I suffer from fibromyalgia. But I don't HAVE to watch out for what I eat, tho it may help. So I did not know what you went through on a daily basis. I am so glad to be a friend of your's. Thank you again for sharing this, and for reaching out. Lori and ChloeToby

  11. Wonderful brave post! It sounds like you have overcome so much!

    My mommy has an invisible disease too endometriosis so she has pain and is tired alot but people don't get it either. If you ever just need a friend to tweet with we are here for you!

  12. Thank you for sharing about your invisible illness. Sorry you undergo so many troubles for just a simple meal! All of us go through some sort adversity, but having chronic and invisible illnesses take such a toll physically and spiritually. I can only pray that you can find comfort in knowing that a lot of us are on your side, and that all that possible energy and thoughts will help you somehow. Don't let the disease beat you; you will beat it. I will pray that you find healing. Purrs. Signed: Smokey8 and Mom

  13. Thank you for another important and personal post.

    I've always wished all the women with cancer would go bald instead of wearing wigs. Mom spotted so many women without eyebrows who were obviously going through chemotherapy when she had breast cancer.

    Each time she thought, if everyone with cancer would go bald instead of covering it up, it would be so obvious how many people around us are affected, and more would be done to find a cure.

    Mom has a lot of invisible side effects from the surgeries, chemo and radiation that she still lives with 11 years later, but she's also really happy that she is living - 11 years later.

    You just reminded mom that she should volunteer to speak at a breast cancer support group - as a long time survivor!

    We're sorry you have Celiac Disease. We're also happy you're here. :)

    Love Cokie