Saturday, September 13, 2008

Invisible Illness as Assertivness Traning

I'm a polite person, my mother raised me that way. I believe in good manners, and, despite the media 'overshare' culture we live in today, I've always felt that there are some things better kept to yourself. I'm just barely old enough to remember when we didn't have people on talk shows sharing their most intimate secrets. I've always felt that they are just plain tacky. Now I've become one of those people. I have an invisible illness and I tell people about it. All. The. Time.

No, I have not gone on a talk show telling people about the latest stupid thing I've done, thank goodness. My mother would start to haunt me if I did that. But, If you meet me in a work or social setting and if we are going to know each other for and extended period or will be eating together, I will manage to work into the conversation the fact that I have a food allergy. Not just any old food allergy, but that I am severely allergic to corn. This means I am allergic to almost all prepared foods, cleaning products, air fresheners and perfumes. That always I carry two Epi-pens, that there are very important instructions for the EMTs on my allergy bracelet (some IVs have corn ingredients and could kill me), and that if you see me swigging from a flask it is just Benadryl, not alcohol.

I now wear the biggest allergy bracelet I can find, because I need to have a lot of information on it and because it helps me talk about having a chronic illness that I need to manage. I used to not mention it until there was a problem, even then I would do my best to hide the fact that I was having a reaction till it got to the point that I had trouble breathing. When I first started reacting, I would often wait to take anything until I could have someone else confirm that I was actually having an allergic reaction. This was despite the symptoms I could clearly feel, shortness of breath, dizziness, tight throat and chest, a too big tongue that was suddenly getting in the way of my teeth. My external early phase reactions may be invisible to others who don't know me well or who are not particularly observant, a red flush across my cheeks and nose, hoarseness, a change in the shape of my lips, red eyes -- these subtle signs mean CHUG Benadryl now. But, embarrassed and wanting some confirmation that this really, really, really was a reaction before I went into a Benadryl coma and lost half a day, I would wait till someone else could clearly see that I was having a reaction--swollen lips & eyes, labored breathing. That often meant waiting till I was clearly headed for, or already was in, trouble, then it was too late to put the breaks on a reaction with Benadryl and was time for the Epi-pen and the ER. Ouch.

Now, I push myself to speak up about my allergy for multiple reasons. Food allergies are an invisible illness, no one can tell that you have a problem till, in my case, your head swells up, your throat swells and you stop breathing. Understandably, there are many reasons I try to avoid this scenario. There are also many reasons I speak up.

The first is so that people will know that they can't feed me, it is just too dangerous. I still feel bad about this, and if someone insists I try to say something funny like, "My allergist says I can try new foods in the ER waiting room. But I really don't like to eat there, the decor is so institutional." The second reason is speak up is for the next person with severe food allergies, so they don't have to to the whole song and dance with every person new they meet. It such is a relief for me to meet someone who already knows allergy issues, so by spreading a little education it I hope to make it easier for everyone else. The third reason I talk about my allergy is that by speaking up I am creating my team. My close friends and family, of course, are already members of the "Let's try not to poison Christine today" team. Some days we win, some days we lose. There is so much out there I can't control, but by increasing my team I have additional advocates and eyes. In the corn filled US of A I know I need all the help I can get (Did you know that there is corn in your table salt?).

Little did I know when I got the food allergy diagnosis that I was also getting assertiveness training. I'm still polite, but now I say thing like, "I'm allergic to your lovely perfume." or "No thank you, I'm allergic." to polite people and things like, "No really, it is quite dramatic when my throat swells shut and it will ruin your party if I eat it and have to call an ambulance." or "I'd love to try it, if you'll come to the ER with me afterwards." to pushy people who just won't take no for an answer. Some days I just want to wear a shirt that says Allergic to Corn, Stay Away from me With _____ but the list is reeeeeally long (182 common food ingredients and growing) so for now I'm going to continue to put that assertiveness training to good use.

"Hi, I'm Christine and I have a life-threatening food allergy."


Anonymous said...

yes, indeed, keep speaking up!

As time passes, the people most hesitant to accept that I have a corn allergy are....


Consequently, when corn gets into my food, I have no recourse. It typically takes five days of being a ditz with poor vision and a stumbling gate to get the stuff out of my system.

I'm just going to keep ranting about it. It would be nice to have an epi-pen or some such anti allergen med, so long as "dextrose" isn't on the ingredient list!

Heather said...

thanks for your blog. I follow regularly. You inspire me as you're further along this path then I am and I can only hope to be as together as you are. You are more assertive then I am but I'm getting there. Thanks :)

Christine said...

Hi Heather,
Thank you for the nice comments, I'm glad to hear that the blog is helpful for you. I had to laugh at the idea that I am "together." Mostly I am the horrible warning of what not to do. :) My friends call to hear the latest funny story of how I managed to discover what has corn in it this week -- usually by poisoning myself in the silliest way possible.

Stay safe!