Nicole Dalton is a Los Angeles-based actor and comedian living with systemic-onset juvenile idiopathic arthritis (SJIA). Her experiences living with an invisible chronic illness inspired Nicole to create and produce a digital campaign called Dress to Depress: An Invisible Illness Guide to Getting Ready for a Doctor’s Appointment.
Working with CreakyJoints and a team of writers, producers, and actors who each lives with or advocates for invisible chronic illnesses, such as systemic-onset juvenile idiopathic arthritis, Crohn’s disease, multiple sclerosis, and gastroparesis, Nicole and her cast and crew wanted to creatively demonstrate the challenges around preparing for doctor visits when you have a chronic illness.
Check out the video here and the rest of the campaign at creakyjoints.org/dress.
If you have an invisible chronic illness like I do — I’ve been living with systemic-onset idiopathic juvenile arthritis for nearly 30 years — let me tell you about a friendship lesson I’ve learned over the years.
Even your most empathic, intuitive, guru friend who is always there for you and you deeply appreciate cannot fully understand the level of pain you may be experiencing if they do not also have an invisible chronic illness. An example might be: You feel as though some one is trying to twist and rip your fingers off one by one and that you would rather saw your hands off than have to deal with the rest of your day. Having a chronically ill friend to call and express those feelings and have them laugh, saying, “I totally get it” is one of the greatest gifts you can give to one another.
If you uttered those same sentiments to non-sick people, they will most likely give you a puzzled look and think you are utterly insane.
The Case for Making Friends with Those Who Have Chronic Illness
One way such a connection is formed is through shared experiences.
When Sue and I met 8 years ago, I was the first chronically ill person she’d ever met (besides herself), and a forever friendship was formed. We are lucky to live in close proximity to one another. One of us can call the other and say, “I need you, here” and we show up, to the best of our ability.
Upon opening the front door after getting such a phone call or text, we’ve welcomed each other’s tear-stained faces, sat with each other with our bodies curled into their natural illness position (fetal), and allowed each other to just let out the emotional exhaustion and hysteria from pain.
Sue has answered my call to find me cry-screaming, “I feel like I am drowning in fire!” Calmly and with a look in her eyes that showed that she knew this underworld just as well as I did, she said, “Uh, yes. I know, honey.”
We tell one another our deepest fears, we share the new surprises our bodies have bestowed on us, and we laugh at the ridiculous horror of it all. We celebrate the meaningful moments: “Fucking way to go! You showered today!” because both of know that it is, in fact, a solid accomplishment.
If we really want to turn the afternoon into a rager, we bust out a puzzle — 1,000 pieces. We’re hardcore. Oddly, we always apologize for the current state of our homes, and we each always respond with the same threat: “I will slap you to sleep if you apologize for the state of your HOUSE,” because that’s friendship. We laugh. In the midst of flare-ups, our self-described décor is “what’s within arms reach.”
We remind one another that we are not crazy, that this illness is real, that it is not a moral issue, that our bodies went rogue without our approval or consent. It is a best practice, if you have a chronic illness, to also have a specific lifeline: “phone a chronic friend.” We call each other on our good days and our bad days just to hear the other one say “I get it” or “me too.”
It is wildly reassuring. A body is not meant to be in severe chronic pain for an extremely extended amount of time. This is not natural. One does not habituate to repeated trauma.
Online vs. IRL Friends
I have several chronically ill friends via Instagram. This online support is invaluable in and of itself, but especially when an In Real Life chronic illness friend isn’t available. I see my own story reflected back to me by my online circle and I am reminded that what I am experiencing is reality.
I cannot urge you strongly enough: Find YOUR chronic community. A singular diagnosis does not ensure a universal outcome or experience. This also applies to treatment plans. Just because people are a part of your community doesn’t mean they’re necessarily going to be traveling in your pack.
Our community is a bit fractured when discussing treatment modalities — such as in treating one’s invisible illness either holistically or using western medicine. I don’t know when we got this idea that it has to be either/or. The most important thing is that you find something that keeps the illness from progressing, that keeps you in your life, that keeps you in remission or as close to remission as possible — until we find a cure.
[Note: CreakyJoints encourages everyone with inflammatory arthritis to talk to a rheumatologist about the finding the right treatment plan for them. These diseases can still cause underlying damage to your joints, bones, and organs even if some symptoms improve due to lifestyle or diet changes. Prescription medications are often at the core of treatment due to the strong evidence supporting their success.]
An intimate partner, friend, or even a therapist cannot be everything. Chronic illness is exhausting not only for the person living with it but also for those who transverse their orbit.
Sometimes you need someone who is forced to walk the labyrinth of illness with you, who shares a similar story, who will enter into a pact that can’t be reproduced outside the community of chronic illness — namely, to be the guardians not only one another’s physical bodies but also to bear witness to each other’s souls.
