It's OK to Feel Unhappy When You Live With Chronic Illness
Last year was a rough one.
I was living abroad with a host family, caring for their children, but honestly not up to the task. I had class twice a week and began leaving early, showing up late or skipping entirely. The rest of the week, I spent my days in bed, conserving my energy, until it was time to pick up the children, and then I spent my evenings back in bed recovering from the mere one or two hours spent getting them home, bathed, fed and ready for bed.
I tried my best to help out beyond that, but it was all such a struggle that I hardly had the excess energy. The parents had wanted me to join them for dinner and on family outings, but I was rarely up for it. They tried their best to be accommodating, but just didn’t understand what I was dealing with. I hardly knew myself and whatever energy I could muster up was spent looking for and going to whatever specialists I thought might be able to help me.
Tension with the family grew and grew until finally it had to end. They gave me a few weeks to figure something out, but then I needed to go. I tried looking for jobs in the city with no luck. I tried calling my own family to ask what I should do and if they could help me get home, but couldn’t get ahold of anyone. The night before I was due to leave I was incredibly stressed and had no idea where I was going to go and how I was going to survive. I was standing in the kitchen of my basement apartment when I had a panic attack. Luckily, it wasn’t the first. The last time it had happened I’d foolishly thought I could calm myself by eating. The food got impacted in my chronically inflamed esophagus, and I ended up in the hospital. This time, once I realized what was going on, I was able to calm myself.
I ended up spending the next fours months “CouchSurfing” – staying with various people, sometimes old friends and sometimes people I’d just met. I had no privacy and I still struggled just to get to the store and get food every day. Since I never felt up to going out, my hosts never had any alone time and after a few days, almost without exception, things would become very stressful for the next few weeks until I moved on to the next place.
In September, I finally got a place of my own and in October I began working part-time. Normal for me is needing a nap to recover from showering before getting dressed. Normal for me is being drained by laying propped up, because even that requires too much energy. Last winter, I was waiting until I got better to tell the world of Facebook that I had been sick, but had beaten it. I wanted to be able to add that positive twist. I couldn’t just say “I’m not well” and leave it at that. Throughout the year I mostly avoided social media, but once I began working again I at least felt I had something I could share. But having a job took such a toll on me that I often contemplated forgoing food because the thought of dragging myself out of bed and to the store was so awful. When I tried speaking to the butcher or cashier, I was so disoriented I could hardly form a coherent sentence and would mumble so softly I could hardly be heard. I couldn’t even raise my head to make eye contact.
One day I saw someone walking with a spring in their step, alternating thrusting their arms in the air with each stride. I was so in awe that someone could have such an excess of energy to squander so frivolously.
A social life was obviously completely nonexistent. My only real interaction with people was virtual. I started sharing a bit about my illness, but the little response I got showed me they didn’t really understand. As the holidays approached my roommates would ask where I was going and I tried to find ways around admitting I had no plans. I watched everyone rejoicing online, ignoring my plight, and felt a growing bitterness.
But then I realized I shouldn’t be forcing myself to be happy when I have no reason to be. A growing body of research is showing that forcing ourselves to be positive all the time interferes with critical thinking and prevents us from addressing the problem. Armed with that knowledge, I did three things.
First, I shared a post detailing just how much I’d been struggling with the intention of distancing myself from the friends and family whose silence hurt so much. To my surprise, several others who saw my post reached out to share that they too had been struggling with invisible, chronic illness, which brought us closer.
Second, instead of only posting in support forums when I had a question, I began adding people as friends and connecting on a personal level, which provided the solace of true empathy. I could vent my frustrations and they’d chime in with their own horror stories, we’d roll our eyes and laugh. I no longer felt so alone.
Third, I resolved to commit myself to raising awareness in the hopes that understanding will breed compassion, and I felt so liberated by finally being open about my struggle.
If you too feel angry, bitter and heartbroken, don’t feel pressured to force yourself to create a happiness façade. Rather, find a community you can connect with and something you can passionately channel energy into, despite your current limitations. But most importantly, don’t fight those emotions. They’re a part of being human and if you’re struggling then those emotions are also appropriate and there’s absolutely nothing wrong with them.
This post originally appeared on Uninvisible.
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Thinkstock photo via KatarzynaBialasiewicz.