Trying to get people to understand an auto-immune disorder with few external physical manifestations, is about as frustrating as trying to get directions in a foreign country. Back in 2006, my husband and I took a trip to Mexico. I was very excited about this trip because it was my first real vacation. At 26, I was taking a grown up vacation to Mexico. I will admit, the excitement was almost too much to handle. I stayed up the entire night before our flight practicing key phrases to ask for directions, order food, and negotiate when shopping….all in Spanish. That last item was very important. Once I was convinced I had all my key phrases down, I packed my Spanish-to-English Dictionary in my suitcase and drifted off to sleep.
The next morning my husband and I boarded an early morning flight to Cancun. Before I could enjoy my Sprite, the plane was descending into Cancun. Immediately my heart started racing with excitement. Opportunity after opportunity to use my Spanish began flashing through my mind. Unable to contain the excitement, I turned to my husband and said “from now until we reach the hotel, I will only speak Spanish.” Never one to quite match my level of excitement, he smiled and said “ok, this should be good.” Too excited to try and determine what he meant, I quickly unbuckled my seatbelt. I began pushing past my husband to try to exit the plane. See, I needed to hurry and get off the plane because I had Spanish to use.
When I finally made my way into the aisle, I was met with a long line of people trying to exit the plane like me. Holding true to my impatient self, I loudly yelled “pardona me, necesito un taxi!” I then looked around and noticed that no one moved. Everyone stood stoic in the same position they were in before I yelled my perfect Spanish. I remember thinking to myself that everyone probably didn’t hear me because of the noise on the plane. I quickly cleared my throat and said a little louder “pardona me, necesito un taxi.” Again, no one moved. Now, after two attempts at nicely asking people to move so I could deboard and catch a cab, I became irritated. Gestures, I thought…use hand gestures with the Spanish. My husband apparently saw where this situation was headed and decided to intervene. He slowly stood up from his seat, walked up closely to me, and wrapped his arm around my waist. He leaned forward, and softly whispered in my ear “no one is moving because they don’t speak Spanish you nut”.
That day on the plane I learned a valuable lesson. In my desperate attempt to make everyone on the plane understand that I wanted them to move so I could get a cab, it didn’t occur to me that I was the one that needed to understand. I couldn’t see past what I wanted to see that the other people on the plane also needed something…to get off that plane just like me. To this day I have no idea why I ranked my needs so much higher than everyone else on that plane. Reflecting back on that situation, I imagine that a lot of loved ones, spouses, friends, or parents of people battling illness are like those people on the plane.
Taking a step back, can you recall a time where you were like the nut on the plane yelling Spanish to americans? You know, demanding to be heard but refusing to listen or acknowledge something yourself? Maybe you demanded to be left alone because you were upset that illness made you miss a trip, but forgot that the person you demanded to leave you alone missed that same trip. Maybe you barked at your friend for cooking a meal she should know you can’t eat, but forgot that the mind slip may be the result of exhaustion from trying to give you a home cooked meal after working a 12 hour shift.
Chronic illness can be so consuming. Without a proper support system, you could easily look up and not recognize yourself. But, while receiving support, it is also important for you to be a support for your support system. Remember you are all in this thing together. So, you have to be aware of when your team members are getting overwhelmed. You have to make a special effort to acknowledge the things they are doing, rather than being critical of what is not done. If not, then you are no better than the nut on that plane.
Now, please don’t read this and think that I now somehow have it all together. I don’t. In fact, that nut from the plane shows up on a regular basis. She appears less often than she used to, but believe me she definitely comes to visit. So, I do not have it all together and will never pretend that I do. I am still learning things about myself, my illness, the impact on those around me, and how to hold it all together. But, although I am still learning, I have made improvements. The the two big improvements I’ve made so far: (1) acknowledging that the nut on the plane was and sometimes still is me; and (2) repairing the damage the nut on the plane causes.
Last week I was devastated when my scheduled trip to NYC was thwarted by a surprise crohn’s flare. I honestly can only recall one other time in my life that I cried that hard. While I cried for myself and my husband because he too missed the trip to NYC, I realized that it had been a while since I truly outwardly acknowledged this other person living with my illness. It was not until things came crashing down that the true extent of his suffering and sacrifice hit me. I always make it a point to tell my husband how much he is appreciated and thank him for what he does, but it had been a while since I carved out time just for him to be celebrated. I somehow stopped doing a pulse check to ensure he was handling everything being thrown our way…and that can be a dangerous mistake.
So, I picked a day and stopped talking. I listended and observed my husband, and saw he needed an Appreciation Day. I planned a day of alone time for just the two of us. The morning was supposed to start with breakfast for two, but actually started with us laying in bed talking in our quiet house. I gave my husband my undivided attention, and let him tell me how he was dealing with everything. I let him tell me any fears he had and ask any questions. I let him tell me how overwhelming things can be, and how he hated the illness as much as I did. Most importantly, I let him share the rest of his world, because it is so much bigger than my illness. It was refreshing to hear his feelings without fear of criticism, but also see weight come off his shoulders because of honest diaglogue. We then went for mid-morning massages and closed out our afternoon with a dine-in movie.
Friends, while fighting chronic illness we cannot forget those fighting with us. Like us, they too have needs and get tired. Receiving a diagnosis can be devastating, and make you feel like your world is caving in on you. It is so easy to feel like you are now in a world all alone, and sadly some people are. Some people are not blessed with great support systems. But, for those of us who are, we have to acknowledge them and the fact that they too have needs. We have to stop talking about what we need, to hear what our supporters need. It is very difficult to hear, when you are talking.