Stigmatizing pain behaviors: Trigger avoidance
I promised everyone some more specifics on “pain behaviors”, so here's one example. Some types of “pain behavior” contribute to stigma even though they are healthy. Migraine may be considered an invisible illness, but certain behaviors are a dead giveaway. One of the ways we become more visible is by trigger avoidance. No matter how discreet we try to be, trigger avoidance sets us apart and draws attention to migraine disease. Once others know that we have migraines, their false beliefs about migraine get projected on to us.
I frequently get concerned that people will misinterpret my behaviors as rude or demanding, so I try to explain that I do these things because of migraine. Because of their preconceived ideas about migraine, my explanation often makes things worse. In doing all the right things to stay healthy, I can make myself a target for stigma. It is especially strong in certain situations.
At the pharmacy
Standing in line at the pharmacy is the worst. The last time was especially bad because I had to pick up medicines for everyone in the family. I was surrounded by a dozen people old enough to be my grandparents all waiting on me to finish. To make matters worse, there was a delay with one of the prescriptions.
In these situations I know that any display of strong emotion can get me labeled a "drug seeker" so I try to be especially polite and patient. After a long delay, the pharmacist finally hands me 10 bottles, each in a separately stapled bag. I was convinced everyone was thinking, "What's she doing with all those drugs?"
The bill was over $200 even with insurance and discount coupons. The pharmacist asks, “Did you know it was going to be this much?”
“I’m surprised it’s not more,” I chuckle defensively, avoiding eye contact as I swipe my card to pay the bill. Walking away with a huge bag of medications I worried that people might think I was a drug-seeker even though none of the medicines were addictive painkillers.
Wearing sunglasses indoors
We have stockpiled incandescent light bulbs, so I rarely worry about light as a trigger in my own home. However, the rest of the world is just waiting to blind me into a migraine with flickering florescent bulbs and flashing neon lights. The only thing standing between me and the next attack are a pair of cheap sunglasses.
I don’t ever see anyone else wearing their sunglasses indoors, so I must really stand out. I was raised to have manners. That meant removing hats and sunglasses inside. I was also expected to make eye contact when speaking to someone. That’s pretty hard to do when you are hiding behind big, dark shades. If I was raised with these expectations then a lot of other people were, too. Do they think I am being rude? For the sake of polite manners, do I owe them an explanation?
Declining offers of food or drink
I really hate it when I am offered food or drink that are triggers. Social convention dictates that I must accept the offer, yet I can’t. It was so much easier when I accepted the offer and ate the food anyway. I would quietly accept the consequences in isolation and the host would never know. To do that now is just being a martyr for nothing. This is one of those times I really have the urge to step into educator mode and share everything there is to know about migraine triggers. Most of the time I can resist and just say, “Doctor's orders,” or “I’m allergic.” Claiming “allergy” or blaming the doctor are socially acceptable excuses for declining an offer of food or drink. Anything else is considered rude.
Asking for accommodation
Everyone is having a great time and then it hits me. The lights are too bright. The noise is too loud. That incense is killing me. Even in my own home, I feel a sense of shame when asking my family to quiet down, turn down the volume or turn off some lights. I do it anyway, but not without being convinced that everyone thinks I’m spoiling their fun. I’m an introvert, so I’m not exactly the life of the party anyway. But when migraine symptoms hit, it feels like I’m asking too much of others. I get these random thoughts that I should be able to protect myself from triggers without asking anyone else to change or appear different in any way.
You would never know this by looking at me.
If you were with me in any of these situations, you would never realize how I truly felt. I can assert my need for accommodations with diplomacy and grace. To anyone else it appears as though I am confident, self-assured, and relaxed. No one would ever guess that my heart pounds just a little harder, my throat feels a little tighter, and for a microsecond I seriously consider biting my tongue.
It was easier when I thought the attacks were random and uncontrollable. I could be viewed as the innocent, yet courageous, victim of unfortunate circumstances. It is much harder to take the necessary steps to avoid known triggers. Trigger-avoidance behaviors make migraine more visible by drawing attention to the many strange things we must avoid. Healthy trigger avoidance behaviors can make us look like “spoil sports” who ruin everyone else’s fun.
What do you think? Are there certain situations in which you feel stigmatized or embarrassed by migraine? How do you cope?
How much has your migraine disease changed or evolved over time?