After a Chronic Diagnosis w/ Guest Chanel Riggle

How can a person coexist with constant pain and no clear cause? And how can we better support a loved one going through a tough time?

Who among us doesn’t yearn to feel seen, heard, and believed? Don’t we all try in a million ways to express how it feels to be alive and hope that we’ll be met with a shared humanity, rather than a confused look that says we’re alone? Don’t we women in particular carry the frustration of thousands of years of “hysteria”, a word formed from the Latin roots for female organs to describe unfounded overreactions, a diagnosis of flawed perception, a dismissal of experience? We do, and the invisible pain of dismissal flashes into visibility now and again: in America, glimpses appear in the Black maternal mortality crisis, the white suburban opioid epidemic, any room in which sexual assault is alleged, high school girls’ locker rooms, even military bunkers. 

Professionals and loved ones don’t always dismiss our pain for lack of compassion, but often for utter lack of answers. Doctors and detectives work hard to solve mysteries and eliminate problems at the source, so ambivalence and ambiguity are seldom welcome. It’s tempting to let problems fall into one of two categories, either clearly traceable to a physical cause, or baseless faking for attention; it’s much harder to hold them up in the air between the two. 

Medically unexplained symptoms (MUS) or persistent physical symptoms (PPS) like chronic fatigue syndrome, irritable bowel syndrome, fibromyalgia, and functional neurological disorder live up in that middle space. When a person experiences daily pain, fatigue, distress, and impaired ability to function, but no clear path to relief can be discerned medically, what is the person to do? How can a person coexist with constant discomfort and insufficient support?

I asked Chanel Riggle, Substack writer of Motherhood Minute and The Bible School Notebook, these questions and more. Our conversation below has been edited for brevity and clarity. 

Can you tell me a bit about the background of your illness? 

Two years ago, I was in a season of running a car-detailing business with my husband, and my day-to-day was sitting in a small office with a baby on my lap running all the administrative aspects of the business. In July 2022, my body started feeling extremely overstimulated, like I was covered in painful goosebumps; I was extremely exhausted and even fainted one night while getting up to breastfeed my daughter. First-aid responders did all the vital checks in my living room and said I seemed perfectly healthy, just needed rest. Everyone assumed I was a stressed new mom, not taking care of myself properly. Then almost a year later, in July 2023, I suddenly became ill. I couldn’t get off the couch; I fainted again, and everyone said the same thing. I started going in and out of ERs extremely weak – one of those times, I stayed in the hospital for 3 days, testing for and ruling out heart conditions. I felt like I had pins and needles on my hands and arms; they said it was an anxiety attack, and I knew it was not. In a matter of days, the pain took over my whole body and has never completely gone away. Last fall, I was working from home because I couldn’t go out. I was so tired, felt like I had burning ropes around my skin, horrible pins and needles. Nobody could find a cause. I got very used to going to the emergency room or urgent care and hearing the same thing – there’s nothing wrong with you. I see you have a history of depression, it’s probably related to that. I started writing about the lack of resources and the disconnect between physical and mental health providers. I waited 7 months for an MRI, and it came back with nothing. The doctor had no more tests, so she diagnosed me with fibromyalgia, and it completely wrecked me. It’s not that I want a worse diagnosis, but fibromyalgia has no cure, it can only be managed or coped with. 

It was suggested that I change my diet. I have 5.5 years clean from drugs and alcohol, and the idea of giving up sugar altogether felt as hard as giving up those things [laughs]. One day, in rebellion to the health diagnosis, I binged on sugar and carbs, and the next morning (my daughter’s third birthday), I woke up vomiting. It was a great lesson in surrender, and I began the difficult process of giving up dairy, gluten, sugar, and corn products. 

But you’d been eating all those things throughout your life and not having problems with them before, is that right? 

I’d had some inflammation or hormonal issues in the past, but I never knew why. I managed to cut my pain down by about 75% after giving up all these things. I’d mess up in the beginning, have strong cravings and accidentally eat something with the wrong ingredient. 

How did the people around you handle it?

In the beginning, everyone was super concerned about me because I was in the hospital. But I didn’t have answers, and that makes people frustrated – if people love you, they want to fix you, and if they can’t cure you, it’s…it’s like you become another stressor in their life, and it’s easier to pull away. I have an extremely supportive husband – I’ve never felt unsupported in parenthood or housework – but his being gone the last couple of weeks has made life unmanageable. It stresses him out – I tell him our daughter’s having a tantrum, I’m exhausted, and my skin is on fire. He tells me, I love you and please go get some extra help. I feel like shutting down. It’s a daily battle – am I going to be honest and stress him out again, or just shut down like I used to? 

I have a friend with an autoimmune disorder, and she feels conflicted when people ask, “How are you feeling today?” with the best intentions and hoping for good news, but she doesn’t have good news to report and might never. 

Whether it’s motherhood or dealing with chronic pain, we all need to learn to be better listeners for each other. When someone’s dealing with those things, it’s less helpful to offer solutions for “fixing it” and more helpful to say “That really sucks, and you can vent to me anytime you need.” I tell new moms all the time, text me at two in the morning if you need to vent. I still have boundaries, of course, but letting people have space to grieve is one of the healthiest things we can do. When I’m struggling and I don’t have that space with people, that’s when I feel more isolated. 

That’s what I like about recovery groups, that we get the opportunity to be heard and met with relatability and shared experience, not just instructions from someone who’s never had the same problem as us. Somehow that heals us; just knowing we’re not alone is a solution in itself. 

I completely agree, and with this chronic pain, I went back to the basics of any recovery group: how do I get the courage to share my experience, how do I get through the day. I’m so grateful to have NA [Narcotics Anonymous]; I don’t know how anyone lives without it. 

Another way to be supportive to someone going through a hard time is, instead of asking, “How are you doing?”, to be more specific like, “How was school drop-off this morning?” or offering something specific like, “We’re going to the park today, would you like to come?” 

Yes, I love when people ask specific questions that show they remember your last conversation like, “How did your mom’s surgery go?” or “What’s your toddler eating these days?” Those questions are a lot easier to answer than “How are you?”

It’s the same way I felt in the first year of motherhood, where I knew deep inside I wasn’t well, but I didn’t know where to turn for help.

When people ask how I’m doing, it feels more like a conversation stopper than starter – if I’m not doing well, I don’t want you to shut down. It’s a constant negotiation. 

We all have to let go of expectations for ourselves and accept that we can do some things but not everything. That’s tough for addicts like us who want to do everything or nothing. The risks of overdoing it are higher for you. 

Right, I don’t know what I’ll wake up to every day. If I have a flare-up, I instantly want to blame myself for not doing a lifestyle change perfectly. But the nature of this diagnosis is that pain happens. My husband has a hard time accepting the helplessness, and I just try to stay positive for him and do my best which, at the present moment, does not include continuing to see more specialists and do more tests. 

Maybe feeling perfect all the time can’t be the only metric of success because it’s not realistic, but rather managing the symptoms of each day as best as you can. 

Right, and that’s a lesson for life in general. One of the unexpected blessings of any sort of suffering is understanding that there is suffering in life, and if you can make peace with that, then you can also find joy. I’ve been bedridden in a flare-up and still in gratitude, saying Thank God I’m not in the throes of addiction anymore; I’m not hopeless, I have a bed to sleep in, etc.

Gratitude can be such a powerful healer when it comes from yourself authentically, rather than being thrust upon you by others telling you to “just be grateful” during a hard time. 

It’s hard for people to accept complex grief, but if you can acknowledge it, you can find extraordinary healing. I pray all the time, thanking God for my supportive work environment or my kid, but I also really struggle with suggestions like making gratitude lists, because it feels like an inauthentic expression of gratitude. Can you imagine if someone had a red, blistering face and their kid was throwing a tantrum and another person said, I’m not hearing a lot of gratitude, you’re bumming me out.

You wouldn’t tell me to make a gratitude list if my face were visibly on fire, rather than just feeling like it.

Your earlier point about suffering reminds me of a little sign my father had in his office that said, “Shit happens”, as a reminder that life isn’t supposed to be perfect; things going haywire is the norm, and our resistance causes more suffering.

We’re not comfortable with a lack of control. The more I communicate with God that I need help, the more peace I find in the struggle, even if the situation doesn’t change. 

We’re sold on the idea that we can control every aspect of our health and wellness, but we’re really just staving off our fear of mortality – we all have limited control. 

Being in recovery taught me that when we take away what we’re using to feel better, we have to deal with whatever’s underneath. God is always peeling me like an onion.

I can’t separate myself into different parts: mother, chronic pain patient, worker – there are no simple answers, I just want space to be complex.  - CR

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If you know of supportive resources for people living with chronic illness, please drop them in the comments below. 

And if you’d like to get connected with other moms and the professionals who help us, join Chanel’s Mental Health & Motherhood Virtual Conference on October 11, 2024.