Living with chronic illness is quite taxing. It taxes the mind, body, and soul almost equally. As I’m sure most people dealing with something chronic have noticed; it wears on your relationships, too. A lot of the resources and anecdotes I’ve found online when researching for myself dealt with helping to cope with the physical aspects of chronic illness (specifically physical ailments, mental health is another discussion for another day). What I didn’t find was advice on how to maintain my interpersonal relationships and help people who can never understand, understand.
The best way I’ve found to explain chronic illness to friends and family has been the Spoon Theory by Christine Miserandino. If you’re not familiar with the analogy, you can find it here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
But this got me thinking and I decided to do some self-reflection. I’ve found myself frustrated with the expectations of my relationships lately. There’s a precarious balance between making your friends and family aware of what you’re dealing with and running it into the ground and making people uncomfortable. For me, my illness and limitations are something I have to think about constantly. My friends and family don’t. I don’t look sick, they can’t feel what I feel, so out of sight out of mind, right? It’s not their fault and they don’t mean to disregard my feelings, but it still gets very frustrating for me. This is what I lovingly call the Chronic Friend Tax.
If you’re my friend, I’m your biggest cheerleader and supporter. Sometimes being a good friend comes at a physical detriment to my own wellbeing. Some might say, “Well, just don’t do things that make you feel that way.” Everything makes me feel that way. Everything costs a spoon or two. So I’ve started explaining it as the Chronic Friend Tax. It’s the extra spoons it takes to be your friend. It’s the reason I might leave early from a gathering or fall asleep while hanging out. It’s why if you invite me to dinner, we can only go to certain restaurants that have dishes available without certain food triggers. My life and the hoops I have to jump through to stay healthy are high maintenance. It’s not easy to be my friend but it weeds out the fakes, too.
There’s also a level of understanding I expect from my friends and family. For example, if I’ve traveled more than 30 minutes to visit or hang out with you, I’ve willingly put myself through pretty severe back, coccyx, and hip pain to see you. In some ways, I expect that to be appreciated. That does NOT mean feel pity or guilt. That means appreciate the commitment to our friendship. I don’t want or need sympathy. These things are facts. I just want mutual respect from my friends and family. The frustrations come in when careless comments are made. Saying things like “You’re always in pain” or “why are you always sick” get to be pretty negative or hurtful.
My advice to friends who might struggle to understand what their loved one is going through is to remember the tax. The extra spoons are worth being your friend. All we ask for is understanding, acceptance, and respect. It’s not easy being our friend and it’s not easy to be us. But we will willingly pay the tax for you and hope you’ll do the same for us.