On Cancelled Plans, Building my Chronic Migraine Literate Support Squad
Canceling plans is something almost every chronic illness warrior I’ve ever connected with relates to strongly. The unpredictability and severity of symptoms means that often attending events is out of our control, and as much as our hearts might want to go to something, there are times where our bodies fight back with a resounding no.
This weekend, my boyfriend and I agonized all day Saturday about whether or not I would come to a birthday party with him that evening. We moved to a new city in July, so I’m making every effort to meet and connect with the people who are in his daily circle. On Friday night, I had an intense migraine flare, with 3 hours in the middle of night ruled by ice packs, medication and breathing mindfully until the pain subsided some. It was brutal, and although I woke up feeling much better pain wise, I had negative twenty-five points of energy in my tank (imagine a sloth on sedatives, one of my favorite fatigue visuals).
So, all day long, on Saturday, we tried to answer the often unanswerable…is it worth pushing myself to go and risk a flare up again? As much as I wished for a clear answer, yes or no, a myriad of factors had to be considered in trying to reach a decision. How late would things likely go? Would it be loud/have music playing? Be inside or outside? How many people would be there? Would the lights be low or on all the way? The list goes on and on…
That specific day, the main questions were, “am I willing to take the risk that attending might lead to a flare up and another attack?” and “do I have enough energy to try and go?”. However, the specific questions which plagued me on the that particular day don’t represent the full gamut of issues that I am often faced with when deciding whether to keep or cancel plans. In the landscape of chronic illness, there are a variety of different circumstances that cross our paths frequently and cause cancelled plans.
The reasons for having to cancel plans include, but are not limited to…
“There is no way I can get out of bed, I am in too much pain and in the midst of a very active flare“
“I had such a bad attack earlier today or yesterday and I’m afraid it will kick back up”
“I’m fatigued from an attack and cannot fathom having the energy to walk, talk or maintain a conversation”
“I had to use my energy to do something mundane (like grocery shop) and I just don’t have the spoons (energy) left to go out again”
“I’ve been taking too many rescue meds this month and can’t risk a flare up for a non-essential event”
Cancelled plans will always happen while living with chronic illness, so helping our support team to be literate about our condition can soften the blow of missed event after missed event. I think it’s unrealistic for all of our friends to be completely literate in our language, but I wholly believe that taking the time and effort to teach our inner circle about what we are going through leads to more support and better understanding.
Part of my stress about Saturday evening was that it would be with a new group of people unfamiliar with my health struggles. This makes it more difficult for me to advocate for myself (can we turn the lights down, the music down, go outside for a bit, or I need to leave early…). In the eyes of new friends, when we first meet, I look totally normal (thanks #invisibleillness), and educating new people about my condition is a process.
“You look great though!”, “Yes, that’s why it’s called an invisible illness”. Looking healthy can make chronic illness harder for the people around us to understand.
Although having conversations with friends and family about the many reasons and circumstances behind cancelled plans can lead to more empathy and better understanding, it’s not an easy process and takes time and patience. There are plenty of hurdles when it comes to communicating clearly with our loved ones about cancelled plans. I joke with my family that the people who have gone through this process with me in my life are “chronic migraine literate” (and total MVP’s if you ask me).
For my chronic migraine literate squad, a basis of understanding and empathy was not built overnight. It was carefully constructed through vulnerable and honest conversations about what I am currently experiencing and what I have gone through in the past. These people have developed an understanding of how much my symptoms vary day to day, and the difficult circumstances with which I am often faced in making decisions about how to proceed. This has happened over time by way of my sharing these experiences with them.
I often think about how long it took me, as the person going through this illness, to understand and have compassion for my situation. I try to reflect on this when speaking to friends and family about my illness. I imagine myself in their shoes and with their life, hearing about and trying to grasp the day-to-day of such a life altering and confusing disease. When I do this, I have even more understanding about how much time it takes for others to comprehend what I am going through. Often our closest friends want deeply to support us, but need direction on how to do so (because life with chronic illness can be confusing af, am I right?).
The “cancelled plans guilt” is heavy and layered. Guilt for letting others down, frustration about your illness, feeling disconnected and isolated…, (I’m sure if you’re reading this you can think of about one hundred more). If we can lighten that load even the tiniest bit, then I think it is worth it.
So my sistas, get out there and teach your people the language of your illness. Accept that learning new things takes time, and you might have to use different tools to teach different people about different aspects of life with your disease. It might take time, and that is okay. I mean, you’re teaching someone a new language for goodness sake!
But once they learn, it will improve your communication and facilitate ease. And the heavy burden of having to cancel plans will feel a little lighter. You’ll start to get texts back with more empathy and understanding. It’s a win-win, you’ll feel a little bit better and so will the party being cancelled on.
One day at a time fellow warriors, you got this! Happy Healing!