Invisible Illness vs. Visible Illness

I have visible illnesses (eczema, sometimes my allergies, sometimes my asthma) where I have symptoms that are obvious to anyone and people don’t really question my sickness. I also have invisible illnesses, like Celiac Disease and food allergies. Unless I’m having an anaphylactic reaction, my food allergies are not obvious by looking at me. Many of the symptoms of Celiac Disease are not visible at all and people can only judge based on what I tell them.

This is somewhat related to the difference between signs and symptoms. Symptoms are subjective and self-reported (fatigue, headache, pain). Signs are observable by people or doctors (though it can include things that regular people cannot see, such as blood pressure).

A lot of people with visible illness wish their illness were invisible. I can relate to this feeling about eczema because people wouldn’t stare at me or make rude comments about my appearance.

A lot of people with invisible illness wish their illness were visible. I can relate to this feeling about my food allergies because people wouldn’t do things like try to sneak nuts into my food to see what happens.

But no matter if an illness is visible or invisible, they are more alike than not.  People who are suffering from invisible and visible illnesses are more alike than they are different.

• People make rude comments whether you are obviously sick (“oh my gosh, what happened to your skin?” “Are you okay?!”) or look perfectly fine (“Celiac Disease is no big deal!”)

• People disbelieve how sick you really are. Visible: “Well, that must suck, but surely she can still do X,Y,Z.” Invisible: “Her allergic reactions can’t be that bad! I’m sure she’s just exaggerating.”

• People are annoyed or made uncomfortable by you. Whether your sickness is visible or invisible, there is always the sense that you’re a burden.

• There is a feeling of isolation. If you’re obviously sick, you don’t necessarily feel comfortable going out in public. If you’re not visibly sick, you feel like you’re the only one of your friends and family that has to deal with this…

• There is the overall sense of feeling that people just don’t get it. They don’t understand what you’re going through, they can’t empathize, and it’s frustrating.

These are things that invisible and visible illnesses have in common. In my experience, the only big difference is that when you’re visibly sick, people stare at you. And when you’re invisibly sick, people don’t look twice at you because you look “normal.”  For myself, I would pick an invisible illness over a visible one, any day.   For me, it makes it much easier to keep calm, carry on and feel relatively normal.

Anything you would add?   

Raising Awareness for Celiac Disease and Food Allergies

“You may never know what results come of your action, but if you do nothing there will be no result”-Mahatma GandhiThis is a big month.  It’s Celiac  Awareness Month.  It’s Allergy and Asthma Awareness Month.  AND, it’s Food Allergy Awareness Week!

There is a lot of talk about what being an advocate or raising awareness means – or whether any given person is doing enough. Many people have more influence than I do, but that doesn’t mean I can’t do anything.  Through advocating for myself in my day-to-day life and through writing this blog, I know I have raised awareness. I  don’t have the sphere of influence that Jennifer Esposito has, or some of my favorite bloggers (Celiac and the Beast or Gluten Dude to name a couple), and I don’t have much free time to volunteer for any organizations at THIS time,  but I still see results of blogging and advocating for myself.

How? Here are some examples…

•   My work has a pizza day. I’ve mentioned before that they now understand that the gluten-free pizza needs to be prepared separately, brought in separately (they have the box wrapped in plastic bags) and even served separately. They keep it in a separate room away from all the other pizzas.

• All of my friends and family TRULY understand cross-contamination and Celiac Disease. My mom is throwing me a going away party next week, and a friend I haven’t seen for some time emailed me about ingredients and also told me how she’d be sure to not just bring something gluten-free, but prepare it in a way so that it isn’t cross-contaminated. I’ve mentioned in this post how great my friends and family have been and it’s because they’ve learned from this blog.

•  So many people have no clue what Celiac Disease is and when they ask, I’m happy to explain. Each time I give a clear explanation, there is one more person who understands.

•  Every time I go to a restaurant and explain my needs, one more person learns what’s required to serve someone with Celiac Disease or food allergies. Maybe this won’t change their serving practices in the long term, but maybe it will. Either way, it plants a seed of knowledge.

•  My new colleague at work (and ultimately the person who is replacing me) is from China, where food allergies, according to her, are pretty uncommon. Yet, she now knows to eat her peanuts in the kitchen (rather than in my office where she’s working) and to wash her hands after. She already understands cross-contamination. She asks if she can open the office window or if the pollen will bother me.

• -My friend, who works at a restaurant has shared some of my blog posts with her restaurant coworkers so they can understand how cross-contamination can affect someone with Celiac Disease.

Maybe you think these instances aren’t a big deal. But to me, this is huge. These people now have knowledge which they didn’t previously have. And they can pass this information along to others.  This is raising awareness.   Maybe I can’t change the entire world, but I can help change MY world.

In what ways do you try to raise awareness for Celiac Disease or food allergies? 

 

How Treating Eczema is Like Whac-a-Mole

Does anyone remember that arcade game called Whac-a-Mole? Here’s a description from Wikipedia:

A typical Whac-A-Mole machine consists of a large, waist-level cabinet with five holes in its top and a large, soft, black mallet. Each hole contains a single plastic mole and the machinery necessary to move it up and down. Once the game starts, the moles will begin to pop up from their holes at random. The object of the game is to force the individual moles back into their holes by hitting them directly on the head with the mallet, thereby adding to the player’s score.

While I’ve never heard this before, Wikipedia says Whac-a-Mole is used colloquially “denote a repetitious and futile task: each time an adversary is “whacked” it only pops up again somewhere else.” Does treating eczema seem like Whac-a-Mole to anyone else?

Before now, I very infrequently wrote about eczema because I hate thinking about it. It consumed my childhood and I have a PTSD-like reaction to even tiny amounts of eczema now.

As I’ve mentioned in other posts, I’ve been going through a very stressful time – selling the house, planning a cross-country move (it’s way more challenging than it sounds, especially when you’re well-established in your current residence with a longtime full-time job, house with a mortgage, etc.), being in one of my BFF’s wedding, and training my replacement at work. My free time is filled with packing (or watching my boyfriend pack), college graduations, bridal showers, meeting up with friends and family for the last time, making hotel reservations, last minute doctor and vet appointments, getting cars inspected for the long ride, and doing last minute things required for closing on the house.

Needless to say, I am itchy all the time lately. I am stress itching, and my skin is acting up more than it really has since I was a teenager. It’s aggravating and frustrating and every time I get one rash under control, it seems like another pops up. Every time I stop itching one spot, another spot gets itchy.
Every time I can stop being self-conscious about one thing, another area starts to look bad.
Anyone else notice this sort of pattern with their skin? Who else has eczema that gets worse under stress?

Crawling by Linkin Park – Clearly a Song about Eczema

I love this song so much lately because I don’t even HAVE to change the words for it to make sense! It describes how I (and probably others with eczema or skin conditions) feel.

Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing what is real

There’s something inside me that pulls beneath the surface
Consuming
Confusing
This lack of self-control I fear is never-ending
Controlling
I can’t seem
To find myself again
My walls are closing in
Without a sense of confidence
I’m convinced that there’s just too much pressure to take
I’ve felt this way before
So insecure

Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing what is real

Discomfort endlessly has pulled itself upon me
Distracting
Reacting
Against my will I stand beside my own reflection
It’s haunting
How I can’t seem
To find myself again
My walls are closing in
Without a sense of confidence
I’m convinced that there’s just too much pressure to take
I’ve felt this way before
So insecure

Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing what is real

Crawling in my skin
These wounds they will not heal
Fear is how I fall
Confusing, confusing what is real

There’s something inside me that pulls beneath the surface
Consuming
Confusing what is real
This lack of self-control I fear is never-ending
Controlling
Confusing what is real
Lyrics from eLyrics.net

11 Reasons I Hate Eczema

I try to avoid writing negative posts because everyone has problems and I’m lucky in comparison to some … but today is one of those days where I’m going to be negative.

1) I hate that SOMETHING besides the weather and my own sense of style (or lack thereof) dictates what I wear. Wearing long-sleeves and pants during 90 degree weather is not only uncomfortable, it also generates lots of questions.

2) I hate when people ask questions. “What happened to your [insert body part here]?” “Is that poison ivy?” “Oh gosh, it looks like it hurts!”

3) I hate when I’m constantly itchy, especially if it causes me to wake up at night. Even more when my scratching causes my BOYFRIEND to wake up at night.

4) I hate that it makes me anti-social and self-conscious. I don’t want to go out, I don’t want to be seen, I feel ugly and uncomfortable in my own skin.

5) It makes me feel awkward when people look at me, like they’re going to find something wrong if they look for too long.

6) I hate that the medications which treat eczema can have such awful side effects.

7) I hate the false sense of security I get when my skin is clear.

8) I hate that taking showers or going in any type of water stings my skin and is highly uncomfortable.

9) I hate that it makes me seem so shallow and self-absorbed for being so hung up on how my skin looks.

10) Mirrors. Mirrors are a major reason I hate eczema.

11) I hate when the eczema is so bad on my feet that it hurts to walk and hurts to wear shoes, but I have no choice but to do both since I have to work every day.

First Dates and Revealing Health Issues or Special Diets

I haven’t been on a first date in a long time and hopefully will never have to go on one again.  They always feel a little awkward and I never feel like I can completely be myself.   Christine Gallagher, author and therapist, recently wrote an article on the Huffington Post called Twelve Things to Never Say on a First Date.

While a few of the things make perfect sense and are by no means new advice, she brings up two issues which are tough to tackle when you have food allergies or Celiac Disease (or any health condition, really).

4. Physical ailments. This is especially important for hypochondriacs. Trust me — only your doctor is interested in a history of your ailments and injuries. And if you have any suspicious rashes, particularly on hidden parts of your body, don’t tell your date, okay?

5. Special diets. If you subscribe to a restricted eating lifestyle, don’t discuss it at length. You may come across as boring, dogmatic or worse. Vegans should go easy, particularly if their date is happily cutting into a big juicy steak. Eccentric eating preferences should also be handled carefully. I once had a date with someone who revealed they only ate white food. I still can’t articulate why, but this was an immediate total turnoff.

I think/hope it’s meant to be a light article and I certainly don’t take offense to any of it.  But it begs the question: when is the right time to tell a date about your physical ailments, health conditions or special diets?  

Having life-threatening food allergies, it’s pretty important to mention it early on, before I have the occasion to kiss the person.  I mentioned it to my boyfriend before we even went on our first “real” date, because he told me his favorite foods were Thai food and pesto (both which I can’t eat!).  I was already in a relationship with my boyfriend when I found out about Celiac Disease but I imagine I would bring it up on a first date, especially if it were taking place at a restaurant.  At least the article says “don’t discuss it at length.”  I can agree with that.  I think it’s certainly necessary to bring something like that up, but no one wants to hear about it non-stop.

For any other physical ailments, I have waited.  I don’t think I told Eric about my eczema until a few months in, when it came up.  At that time, it was only on my feet and so it didn’t seem necessary to bring up.  I didn’t mention my asthma in the early days either, because it’s under control and just doesn’t really seem relevant in the beginning stages of dating. (Although, I did have a first date take place on the way to the emergency room and I went into respiratory arrest promptly upon arrival, so that conversation happened pretty early on!)

When do you think is the right time to explain health issues to a date?  What have you done in the past and have you experienced any negative reactions from people?

Finding Gluten Free Restaurants for Cross Country Road Trip

As mentioned in a previous post, I am moving to Colorado! It’s happening almost exactly according to our timeline (knock on wood) which is awesome and somewhat unexpected when you think of all the various factors you need to consider like selling your house, having jobs lined up, having money saved, having a place to stay when you get there, etc. etc. etc!

Yesterday, we finally booked our hotel stays for the actual move. We leave on June 10th and have 3 nights in hotels before arriving in Colorado. Our stays are in:

• Erie, PA
• Peru, IL
• Grand Island, NE

Each hotel allows pets for no additional cost and creates 8 hours and 500 miles of driving each day.

Yesterday, I decided to cross-reference these locations with Find Me Gluten Free. After finding a restaurant, I then looked at their menu to see how it sounded. And finally, I’ll eventually call them because I trust no one when it comes to food

On this post I offered my thoughts on what restaurants can do to make a GOOD gluten-free menu. While I will always ask the waitstaff ANYWAY, I find it very helpful when the restaurant has a statement about their practices right on the menu. I was thrilled to read such a statement at Le Peep in Westminster, CO. I don’t want something in writing if the restaurant staff won’t adhere to what’s listed, but putting it in writing at least shows that you GET Celiac Disease and the dangers of cross-contamination.

AAAANYWAY, I was really excited to find Maria’s Pizza at my first stop in Erie, PA.

Click for bigger image.

• The gluten-free crusts are made off-site at a dedicated gluten-free facility.  The FLOUR crusts are also made off-site, reducing the amount of flour in the air.
• There are dedicated pizza paddles and pizza cutters for the gluten-free pizzas.
• Parchment paper or foil is placed between the prep station and the pizza so the pizza doesn’t come in contact with any gluten.
• There are also gluten-free toppings available, as well as gluten-free salad dressings, all listed in this section.

I have not been to Maria’s Pizza yet so I can’t speak for whether they actually follow these procedures or what their pizza tastes like but I think this is a great example of what pizza places should do to keep their gluten-free pizzas safe and if all these procedures WERE followed, I’d feel safe eating here. I plan to try it out when we’re in Erie, PA.

Anyone have any good gluten-free and allergen-friendly restaurants in Erie PA, Peru IL or Grand Island NE?