The Conclusion - the Addict and the Allergeniac

Taro, Looking Hopeful by Taro the Shibu Inu on Flickr

What would I like you to take away from this? There's always HOPE. Even when the situation seems the darkest, there's hope that you can make things happen for yourself, get out of a bad situation, or make a move to value yourself more. You can find resources locally, or internationally via the Internet. You can find connections that can grow into something more on Facebook, Twitter, or other sites.

In the end, sometimes it seems like there's nothing you can do but get out of a situation. It's sad, you're going to grieve for the lost friendship or family relationship, but given the chance to grieve vs. endangering myself, I would rather work my way through the grieving process than spend more time doing damage to myself. I think that's the major thing I have learned over the past years of dealing with trying to figure out what I was allergic to, what I am sensitive to, and what I need to remove from my life in order to make life better.

But at the same time, working to move your outlook over to being positive and keeping your resolve is key. It helps to focus on what you do have, versus what you don't have. Nothing will ever take the place of the original memories in your brain (I am dang happy that I got to do trips to Italy pre-gluten free and China as well!) but the connection will fade (wheat pasta = sick, headache, issues rather than wheat pasta = healthy and happy) so that it can make room for new equations (Schar pasta = healthy and happy). The same thing happens for addicts, from what I'm told, but the original memories make the connection more persistent.

Some days you will fail. Its inevitable. Some days you will want to explode in anger. Some days you will weep in frustration. That is why it is so important to find your people. Your people (friends, family, neighbors, avatars on a screen) can help you get through the bad moments and come out the other side. They can help give you the strength you need in a moment of doubt.

What stunned me the most about learning about addiction and supporting people with addiction is that so many of the issues they face are the same as folks with allergies, yet the addicts and alcoholics have many more resources built up around them that aren't necessarily available for people with allergies, intolerances, and dietary conditions. We need to focus on building up resources so that 20 years from now, the allergeniac diagnosis process includes help from the very start with a built in network of resources and rich knowledge base that doesn't rely on fraud science to help them. Do we need a 12 step program for allergeniacs? Maybe not, but I could easily see a regimen being created to help people get through the beginning of the diagnosis process, and ongoing support for issues along the way.

Part 2 - What Allergeniacs and Alcoholics Can Do (Fix 3 and Fix 4)

I've split this up into two posts because that first one got to be SO long! But I keep telling myself that this grouping of knowledge into one place will help people along the way, so here goes part 2 of part 2 :-)

Fix 3. Working with denial.
Denial can be healthy. It can help people deal with traumatizing information, such as major life changes. But when it starts to drag on beyond a brief step in the grieving process and coping process, then it becomes a problem. If its you that's in denial (I see you, celiac, with the McDonalds bag!), its a process of figuring out what you are afraid of and then seeing if it is really all that bad. For some folks, trying to live life as an allergeniac 10 years ago was horrible. They had to make all their own flours and cook all their own food, and never go to restaurants because no information was available about what was in the food. That's what they remember, and rather than go back to that life, they continue to make themselves sick. Encouragement for them to try it again, that you'll plan the week with them, can do a lot to help them erase that memory and stick with it.

There's also that "seed of denial" I talked about in the column. The recovering addict in the meeting said he woke up every morning and said to himself "I am an alcoholic" to keep that seed locked up tight. For the allergeniac, it might be waking up every morning and telling yourself "I will make good choices today" or "I will eat healthy today". Waking up every morning and giving yourself that resolve, before you make any choices and your willpower used, will help keep you on the right path.

Fix 4. Telling people how you feel OR Stand up for your rights
So here's the most tricky one, and its not the weapon I prefer to use most often myself. As a person who has been chronically ill my entire life, I'm used to working around other people. I'm used to putting their needs first. I'm used to just denying that certain problems exist and that I can work around them to be in the situations that I want to be in. The truth of the matter is that you can't do this to yourself, as it will burn your health to the ground, get you into unhealthy relationships, and make you make decisions that lead down dark paths.

At every meeting I go to for various events for charities, work, etc, I always remind the organizers to think about people with food allergies. Building an event with food as the only reason to get people there is a sucky way to sell something, in my opinion. I've patiently done this over and over again, and eventually, they started to get the message when I wouldn't eat anything other than what I brought. Constant, gentle education is one path to take.

Another path is to give them a firm warning. What they are doing is hurting you, and you can't meet there/meet them/allow them within 1000 feet of your children/etc. Tell them you're leaving the relationship. This is probably the best option because it gives them firm guidelines and puts the onus on them to make the decision. Is it the bar or you that they want more?

The last path is to break out the big guns, especially if you are having trouble at work - make an ADA claim. A lawyer can work with you on this.

Just in case you need the reminder the ADA law says: "Disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment.

(1) The phrase physical or mental impairment means --

(i) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine;

(ii) Any mental or psychological disorder such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities;

(iii) The phrase physical or mental impairment includes, but is not limited to, such contagious and noncontagious diseases and conditions as orthopedic, visual, speech, and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, specific learning disabilities, HIV disease (whether symptomatic or asymptomatic), tuberculosis, drug addiction, and alcoholism;" 

source: http://www.ada.gov/reg3a.html

An ADA claim is specifically helpful in cases where you are working and there is a reasonable accommodation that CAN be made but hasn't yet been made. For example, if you have your work meetings in a bar. Can that be moved to the office or a local restaurant? More than likely, yes! Another one: you are being paid and required to attend a lunch meeting with lunch served. Can they get a gluten free meal for you? More than likely, yes! If not, perhaps they could label and/or segregate gluten free foods vs. non-gluten free foods? Again, more than likely, yes! Sometimes you have to stand up for yourself in order to get people to see that you are serious about your health.

Part 2 - What Allergeniacs and Alcoholics Can Do (Fix 1 and Fix 2)

Sorry this got delayed folks, Blogger has been having trouble with my account all weekend and has deleted the draft several times. So in the first part I really talked mostly about the negative sides of living as an alcoholic or allergeniac. But there's hope, even for the most remote folks out there, and it partially has to do with the magic of the Internet.

If you're in any of the situations that I mentioned in part 1, I sympathize, empathize, and am working through the same thing you are. Understand that this isn't just Pollyanna advice for a Disney-fied world, its what I have seen and heard about and/or done myself to get through these situations.

Fix 1. Find your people.
What does this mean? Alcoholics and other addicts have the benefits of a 12 step program of some kind, be it AA, SOS, NA, PA, etc. They have after care options and other support groups.

Allergeniacs are more limited. We have support groups. Depending on the group, though, this can range from serious, discussion groups to party groups that make fun food and try need things all the time. But there's also Meetup for groups of all kinds. Parents of children with peanut allergies? Gluten Free Singles? You name it, its practically available everywhere. But what happens if you live in the middle of nowhere? See 1.5.

1.25. Find your people - Starting your own group!
Yep, that's right. Unfortunately, sometimes you have to just drop the folks that aren't treating you well or relegate them to "Facebook Friend" status until they get their act together. So then the onus is on you to start a group of your own. I've tried it and met some wonderful people, but this does take time, and sometimes money, to get a new group of friends started.

I've also seen some parents have to forbid their kids from going to other houses because they can't trust the parents to not serve their child foods that they are allergic to, or expose them to drugs or alcohol. The transition is much easier when you have replacement places for them to go and people for them to meet.

1.5. Find your people - "Meeting" People Online
What does this mean? There are SO many resources out there for people to do online that it helps make the distance question less of an issue. These are three of the best options for internet based meetings and groups where you can actually SEE people and make a real connection with them.
In the Rooms - virtual support including video meetings, chat rooms, and Facebook-like status pages. Wonderful resource for any type of addict in any location.
Google Hangouts - regular events for allergeniacs and addicts of any kind. Find a community on Google Plus, and watch for announcements. If there isn't one for your allergy, start one! People are amazing at finding these resources when they need to.
Meetup - they also have virtual meetings available on their site. Often these use other tools like Skype or Google Hangouts, but they'll at least post a schedule on there for you.

1.75. Find your people - The Rest of the Internet
There's a lot more internet out there, and not everyone is trying to sell you Rachael Ray's Acai Berry Supplement for $19.95. There are great message boards and chat groups all over the internet. For example, for celiacs and gluten intolerance there are:
Celiac.com - forums and blog. Lots of resources here and places you can ask any question.
Knitting is Gluten Free on Ravelry - wonderfully supportive group of women and men of all ages.
Gluten Free Recipes 24/7 on Facebook - not a lot of chat but a great source of regular inspiration. 'Cause some days all you really need is a good recipe to get through the day.
Gluten Dude - a community of folks rallied around the Gluten Dude. Things can get a little, well, blunt and angry here, but its well worth reading because he's a normal guy who's living with an allergeniac condition that isn't all sunshine and puppies.

Fix 2. Working with a "White Knight" situation
What do I mean by "White Knight"? Your family or friends are used to swooping in, as the hero to "save" you whenever you get into trouble. They're lost when you're not sick, addicted, using, and otherwise freaking miserable.

There's a name for this: codependence. They need to rebuild how your relationship works in a healthy way, because it is not a healthy relationship right now, whether you are an addict, an allergeniac, or psychologically traumatized in some way. There is a great group for this called Co-Dependents Anonymous. Yes, its got the ___ Anonymous name, but its for people who want healthy relationships, not just addicts. Family members and friends of allergeniacs often suffer from the same issues as addicts and in many cases, need their own recovery program to help them deal with a major life change such as a gluten, dairy, or peanut allergy.

As a part of this, sometimes there need to be boundaries set. Often this means cutting off the very people you love, because they will continue to "sneak" the substance into your food OR tell you "It's okay to have one while I'm here". Controlling the situation to help save yourself is key - telling a parent or friend that they can only visit at your house, they will need to be inspected at the door for banned substances (substances of any kind, whether illegal or allergens), and that they will watched at all times can seem hurtful, but it will do one of two things:
1. They'll get their crap together and realize you're serious about living a safe lifestyle from any allergens or substances.
2. They'll stop coming.
If they stop coming, the friendship will naturally recede and if they are family, you might find someone else who can fill their role in a healthy way. Remember: family isn't necessarily blood related. Its whom you value in that way.

Part 1 - What Celiacs and Addicts Have in Common

 

Yes, I think I made up a word for the title "Allergeniacs" meaning: one who has an allergy/health condition/intolerance of some sort. If you like it/don't like it, comment and I'll try to make up a new one. This is the negative portion, part 1 of 2. If you have anxiety, depression, or other mental health issues, I urge you to wait to read this until tomorrow, when the positive portion, part 2 of 2 is posted.

I was recently at an Alcoholics Anonymous meeting, supporting people I know. At this particular meeting, a gentleman was up at the front of the room and talking about his journey from a child, to a teenager, to an adult, to a father and how his alcoholism affected him. What struck me is that I've had and seen many of the same examples in the celiac/gluten allergic/gluten intolerant community and we have a lot more in common than I would bet most people would think. We really should start to band together and support each other!

Here are some of the issues that struck me. I'll probably write more about them again as I encounter them myself:

1. Allergeniacs and Alcoholics are surrounded by danger and temptation. There are liquor stores, grocery stores, restaurants, friends houses, and even gas stations with booze available in them. The Allergeniac suffers a similar woe - practically anywhere you step has something associated with food. Even the freaking library often has cookies. The waiting room of the car dealerships often have flavored coffees and cookies or doughnuts that the allergeniac likely can't eat. Both the alcoholic and allergeniac has to remake their life in order to work around these temptations and deal with going to these facilities without the substance.

2. There is a "seed of denial" that exists once you get better. If you are seeing no symptoms of addiction or side effects of your disease/allergen, you begin to have thoughts that say "You'll be fine if you have one drink" or "You'll be fine if you have one slice of pizza". The next day, you have to face yourself in the mirror and if everything goes okay, one drink or one slice becomes 2. 6. 20. And then you wake up and realize that you hate yourself, the world is awful and that the universe hates you. And you need help to get back to even get to "okay" again. Or just as bad, things go okay, but you have this nagging feeling that things aren't right or your health isn't a-ok and you start to think that is reality, that things will never quite be right for you.

3. The paranoia of the situation starts to eat at your soul. For alcoholics, its always wondering - did they get the wrong drink at a restaurant? What if you accidentally drink from the wrong glass? Will my friends accidentally use alcohol in my food? What if my friends accidentally get booze in my drink? For allergeniacs, its always wondering - did they use exactly what they said to make this food? did they change their gloves? what if my friend drops crumbs on my food, can I still eat it? what if that family member didn't believe me about my allergen and snuck some of it into my food? You begin to realize that eating and drinking anything becomes an operation worthy of D-Day, and full scale wars when you start to have multiple intolerances, allergies, and health conditions.

4. When you make this change to not include the substance in your life, the people you know and love place their food and drink above including you. That's right - they get mad at you for your "food issues". They tell you that you don't love them if you don't eat or drink with them. They hold important things like meetings and social hours at places you cannot go.

Both the alcoholic and the allergeniac have the same problem. We can't go there. Then they force us into re-evaluating friendships and relationships and thinking we've lost our sanity for placing health over eating food that makes us sick or drink what destroys lives.

What's sad is that this makes us sad, feel like we're 5 again and not picked for Red Rover, and there's not a damn thing we can do about it, because these folks will always value their own happiness over ours. Their booze or their fried tortillas or their cream based soups are more important to them because it triggers a chemical reaction in their brain that they associate with positive feelings, and they have less of a "buzz" when they help others achieve this same chemical reaction and make them feel good.

5. The last issue, and by far the hardest issue, is dealing with people in denial or not willing to accept the situation. Many family members and friends just don't believe that their alcoholic has a problem. Or they think "Their dad was alcoholic, and he was fine". Or they think "they just need to drink less" and everything will be fine.

On the flip side of things, family members and friends treat allergeniacs similarly. Many family members and friends just don't believe that their allergeniac is "really" allergic. They sneak the substance into the allergeniacs food and "test" their allergy. They believe that removing a substance from the allergeniacs diet is a "fad" and a little dairy or gluten won't hurt them. Or they think they are self-diagnosing and they really don't have a problem. Or that maybe if they ate less McDonalds, everything would be fine and no one would have to change how they do things.

Both the alcoholics family and the allergeniacs family are in denial about the major change in the life of their addict/allergeniac. They don't have the mental capacity to sift through the information at their disposal and figure out that this person is really suffering and that the fix is simply to remove the substance from their life. They don't realize that what the addict and the allergeniac needs are the same: support.

Unfortunately, the problem with these issues are that they are ongoing. Family and Friends can be in denial forever - it may never end. And the alcoholic and the allergeniac both have to learn to deal with this, and it again will eat away at their soul - some of these folks will never again be able to enter your life, or you have to put such constraints on them that it makes the relationship strained.

But there is a positive side to this. There are SOME ways to help deal with these situations. Stay tuned for Part 2.