They’re two words I hear all the time: “Feel better!”
It’s what well-meaning friends and family members often say to me when I have to cancel plans. I’m someone who loves connecting with others, so canceling plans isn’t something I like doing. But sometimes, it’s what my body needs. Some days, I wake up and know I don’t have it in me.
That’s because I have an invisible illness. It’s a rare immunodeficiency called Hyper IgE syndrome (or Job’s syndrome), and I’ve had it my whole life. There’s no cure, and while I can manage my symptoms, it’s not something that’s going away. It’s part of my life.
My symptoms are often unexplainable, but I know when I don’t feel like myself. Even on good days, I can’t run off a few hours of sleep or hustle the way I used to. I need unscheduled hours, good sleep, and time to rejuvenate. Before my health took a major turn in 2011, I used to be someone who would push myself (and my schedule) to the limit, regardless of how it was impacting my body. But now, listening to what my body needs is my number one priority. Sometimes, my body tells me, in no uncertain terms, that I need to slow down.
That’s why I cancel plans. And I understand why people say “feel better,” and I appreciate the sentiment behind it. But I want people to know that, for people with invisible illnesses, it’s often not about “feeling better.” For people like me, it’s about accepting your body as it is.
What it means to accept my body as it is
Practicing acceptance of my body hasn’t always been easy. For most of my life, I ignored the fact that I had an illness. My symptoms were pretty manageable when I was younger, so I was able to push my illness to the back of my mind. I dealt with symptoms as they came up, and that was it.
That attitude changed very quickly when I had to have surgery to remove a quarter of my right lung. As I prepared to have that surgery, I knew my body would never be the same again. That was hard to grasp at first, but I had no choice. I had to accept that my breathing would never be fully back to normal. As it turns out, I’ve had to monitor my lung health for the past several years, and I’ll likely have to do that for the rest of my life. I hadn’t anticipated that going into surgery, but it’s now a routine part of taking care of my health.
Now, seven years after that surgery, prioritizing my health and wellness is a huge part of my life. Unlike seven years ago, I can walk city blocks without getting out of breath. Climbing stairs or going uphill is still hard for me, and it may stay that way forever. That’s my “normal.” So is being okay with canceling or rearranging plans, even when it’s a plan I’m excited about. This past year, I chose to return from Tel Aviv (where I spend winters), a few weeks early. I wasn’t happy about that, especially because it was still winter in NYC, but I knew it was something I had to do for my health. My body was giving me signs telling me to return to my home base, my comfort zone.
And then, a month or two after returning to NYC, I canceled a trip to see a friend. Even though I was bummed, both my body and mind were telling me that getting on a plane again wouldn’t be a good idea. As it turns out, this summer I’ve been dealing with some mysterious symptoms–and as much as I don’t want to admit it, traveling would have very likely made them a lot worse.
As I manage my illness, I trust my body to tell me what it needs. It’s my job to listen to those signs, even when I don’t want to. That’s what accepting my body looks like for me.
How you can be supportive–without defaulting to saying “feel better.”
Having a chronic illness isn’t like having a cold, but saying “feel better” signals that it’s something that will pass. Lots of people live with conditions that have no cure, or with symptoms that are really hard to manage. Many chronic illnesses are conditions people deal with for life.
With that in mind, here are some ways you can show support…while also acknowledging the reality of invisible and chronic illness.
- Remind the person–with words or some kind of small gesture–that they’re on your mind. A text that says ‘I’m thinking of you” goes a long way.
- Ask “Is there anything I can do for you?” or “How can I be helpful?” Of course, there may not be anything concrete you can do in that moment, and that’s totally okay.
- Say something like, “I’m sorry you are going through this, I can’t imagine how it feels.” With this, you recognize that the situation is hard, even though you don’t know what to say…because who does?
- Ask the person what they find supportive, and what’s less helpful. The truth is, we all experience invisible illness differently, and we all want support in different ways.
In talking about this issue, my goal isn’t to make anyone feel bad, especially the people who have supported me through the ups and downs of my health journey. Believe me, I know how hard it is to figure out how to be supportive. Sometimes, I don’t even know how to tell people what I need. That’s why I want to open up this conversation.
Ultimately, I want people to know that taking care of my body is a full-time job. It’s not something I can check out from. This is me, and if my journey with invisible illness has taught me anything, it’s that I have to be my own best advocate. And while I didn’t always realize it, being accepting of my body–without trying to change it–is a big part of that.