There are moments where I forget that I live with a chronic illness.
Quite unsurprisingly, it’s when things are going well: when sleep is restorative, when I’m in the flow with my work, and when I have friends over for dinner and we find ourselves laughing more heartily than we have in months.
Then, there are times where I am reminded, all at once, that I live with a chronic illness: when I drop my heavy grocery bags to the floor and realize I don’t actually have the energy to cook dinner; when I wake up feeling sluggish and achy; and, when I have to cancel plans with friends because my pain has suddenly escalated and I’m too exhausted to leave my place.
Oftentimes, it’s a game of compromise: if I stay up late to go to an event in the evening, I risk throwing off my sleep schedule and my energy levels for the following day. If I wake up early for work, I will also have to stay in that evening to ensure that I don’t ‘over do it’.
Most of this internal dialogue and negotiation falls into the realm of energy management: the set of proactive practices that I carefully carry out and consider to feel comfortable in my body.
One of the most consistent and persistent reminders of living with a chronic illness for the past 8.5 years is the level of fatigue I experience almost daily. I have been searching for a metaphor to concisely explain to close friends and loved ones about what this level of exhaustion feels like, but none have quite sufficed:
- “It’s like starting your day with your phone at only 20% battery and knowing you should only make crucial phone calls and texts to make it last for the day…”
- “Have you heard of the Spoon Theory?…”
- “It’s the same level of fatigue that you might feel when you have the flu…”
So, here’s my attempt at a new analogy, complete with my own paintings.
The Watering Can Analogy
Let’s say that I have 10 plants in my apartment which I water daily. To stay healthy, nourished, and thriving, they require one full bucket of water to be dispersed amongst them.
Now, let’s say that each plant represents a different responsibility in my life, and the watering can represents my energy levels.
Each morning, I wake up without knowing how much water will be in the bucket. It’s rarely full; in fact, most days, it’s filled half way. On bad days, there’s only enough water for one or two plants. I am left to prioritize the plants which most urgently need water. Inevitably, I compromise the wellbeing of the others. Just as certain plants need more water than others, specific responsibilities require more time, energy, physical and emotional engagement.
There have been weeks on end where the watering can is so depleted that neglected plants start to wilt. Unexpected flare-ups (disease activity), lack of sleep and exercise, chronic stress, injuries, and weather changes are a few contributing factors. In contrast, there have also been times where the bucket is not only full, but overflowing, to a point where I enthusiastically add one more plant to the mix because I am doing so well. When I ask for help from friends and family, carve out intentional time for self-care and rest, and engage in fulfilling creative projects, the watering can tends to stays fuller for longer.
If you are on the receiving end of someone courageously disclosing their chronic illness or fatigue to you, there are a few kind ways that you can respond and be cognizant of their energy levels:
- Listen. It feels good to be seen and heard in a space where judgment is suspended. Believe their truth and their lived experience in their body. It’s as simple as that.
- Respond with empathy, not sympathy. Instead of instinctively reacting with pity (i.e. “I feel so bad for you!”), you can aim to respond from a place of compassion and imagine what it must be like for your friend to navigate these experiences on a daily basis. Refrain from offering ideas to “fix” their illness, pain, or energy levels, as this usually comes across as insensitive – even when it’s meant from a place of care.
- Show up. Telling a friend that you’re there for them is great, but that’s only half of the equation. Showing up for them – that is, supporting them through particularly difficult events and activities – puts this statement into action. If a friend, for example, finds grocery shopping exhausting, you could offer to go with them to the store, prep meals with them, or look into an online grocery shopping delivery service together to demonstrate that you care – all while helping them keep their bucket full for their other responsibilities.
I recently started working full-time and have found this plant analogy helpful to stay aware of how many activities I’m taking on. It has also made explaining my fatigue to others more approachable. To clarify, I am not implying that if you also live with a chronic illness, you should spend loads of your time trying to make your experiences and symptoms more palatable for others to digest. I understand the emotional labour that is already entangled with disclosing experiences of chronic illness (that’s a whole other blog post!). Instead, I’m offering a framework that I’m finding to be helpful in my personal life and that you may find interesting and relatable.
What are your thoughts about this analogy? I would love to hear your own ideas and feedback!