Chronic migraine affects so much more than simply our pain levels. For many of us, it affects our social life, family life, our careers, and even our mental stability. Many of us have been accused of being isolated or withdrawn, nagged about not participating in events, and even told we just are not trying to “push through it” in order to be around more.
Are we ever isolated from those we love and care about? Yes, but for good reason. The symptoms that are associated with migraine and chronic migraine can make it impossible to be around a lot of other people. This has nothing to do with us not appreciating the invitation to dinner or not wanting to simply hang out with you. The numerous symptoms that we deal with as part of a migraine do not give us much of an opportunity to entertain, be entertained, or go out and about. These symptoms include but are not limited to sensitivity to lights, sensitivity to sounds, sensitivity to smells, vision disturbances, nausea, and vertigo. So while a movie and popcorn on the couch seems like no big deal to you, it can be pure torment for us.
There are many times when we have to elect to not partake in various events or occasions because of possible migraine triggers. Things that would not affect a healthy individual can be extra costly to the rest of us. Something as simple as staying up late over the weekend can lead to our heads revolting the next day or even that same night. Going out to bars, concerts, or parties can also easily trigger a migraine. These locations and events can be hard on us because of their smoky and very loud environments. While everybody assumes we are simply being antisocial, we generally wish we could be there making memories with you instead of hiding away in the safety of our dark bedroom.
You will commonly see contributors mention the Spoon Theory; it was written by Christine Miserandino on youdontlooksick.com. The moral of the story is a powerful one: we can only do so much within our own individual limitations. Due to the war going on inside of our bodies, we have a limited amount of energy compared to healthy individuals, which causes our limitations to be different than those of a healthy individual. It is beyond important for us to remember to not overdo it and push ourselves too much. Sometimes even if we are not in a ton of pain, we may simply not have the energy to go out to movies, a concert, or dinner. Especially when we still have to do things like care for children or pets, prepare meals, or do laundry. It is on us to figure out what all we can possibly get done and to do those most important or necessary things first, which can leave us with no energy for some extras even if they are fun filled events. Unfortunately, many of us are faced with significant others, friends, or family who simply do not understand this concept and cannot see beyond the fact that we said we cannot go with them. It is not as simple as ‘pushing through the pain,’ like so many people believe.
I can say from experience, once you start living your life by doing what is best for you and then the rest of the world if you can, things will eventually be easier on you. You will definitely learn which friends are really there for you and not for what you can do for them. When the dust clears, the people who are still there are the most important ones. I won’t lie, it was hard when I first started telling people “no, I cant…” but everybody survived and while they may pout for a day or two, they will ultimately get over themselves. I know we all have a big fear of letting other people down, but at the end of the day you have to put yourself first because nobody else is going to do it for you.