Living With a Chronic Health Condition Is Lonely
My constant pain has confused my doctors and left me feeling isolated.
In the chaotic run-up to Christmas, when holiday, work, family, food and obligations collided with a pandemic, I started getting urinary tract infection symptoms. You basically want to go pee all the time. There’s no relief. It’s constant discomfort.
But it’s no big deal, I thought. Nothing that some antibiotics can’t sort out.
The first cycle of drugs didn’t work—it happens—but neither did the second. The doctors ordered some tests, which gave no clue as to why I had those symptoms. And oddly, the more my bodily fluids tested negative for infections, diseases and cancers, the more worried I got.
My Illness Has Stumped All My Doctors
There were many calls to the doctors, all of which I had to initiate. One theorized I had something called interstitial cystitis. I wasn’t too worried when I heard this. I figured it was just another type of cystitis that would just need different drugs.
It wasn’t until a few days later when I casually Googled the condition that my heart sank, my chest began to hurt and panic set in. “No treatment,” I read. “Learn to manage the pain…symptoms worsen…etc.” Merry fucking Christmas.
Despite a host of bad days, the Christmas period was wonderfully distracting, but the biggest comedown of all soon came. January cooled the warmth of the holiday season that had enveloped me and made me think things might just be alright.
You’d think my doctors would check in on me, as they had just diagnosed me with a potentially lifelong, chronic, painful and incurable condition, but I didn’t hear from them. I started finding my own road map out of this unfolding nightmare and looked for practitioners that may have successfully worked with this condition.
I started working with a nutritionist, which led me to a pelvic physiotherapist and that led to an expert urogynecologist, all of which culminated in expensive visits, supplements and tests. Thank god for credit cards.
I Want Help, but I Also Want to Be Heard
The cost of healing, or even just embarking on that hopeful road towards it, is high, even in a country with free national health care. But health care systems are no good when your symptoms deviate from the textbooks—doctors want to follow protocol and tick boxes. They’ll cram you into a mold. Sometimes, they cram you so hard into that mold that they say things like, “But you’re fine! There’s nothing wrong with you. Go enjoy life!”
Being listened to is priceless. Sometimes, you need to pay just to get someone to hear you say, “I don’t know what’s wrong with me, but this isn’t OK. I’m not OK.” You have to burst out of that mold to have a chance at getting better. You have to find that doctor that listens when you say, “Look I know this sounds crazy, but…” without trying to explain it away.
But empathetic medicine costs money. I’m lucky enough that I have savings and a credit card to get myself better. Countless people suffering from chronic conditions—or worse—do not.
The most rewarding aspect of this experience is actually the loss of that unanswerable question, “Why me?” In the early days, when emotions were at their most concentrated and the question crept up, it was quickly replaced by, “Well, why the hell not me?”
Bad shit can’t always happen to other people. And in some ways, I love that because it means that I am human beyond doubt. It made me realize that life isn’t fair and isn’t up to fate or the stars. It’s up to circumstance, causality and chaos—and me.
Chronic Pain Has Left Me Feeling Isolated and Frustrated
The loneliness of having an uncommon condition is something I was not prepared for. (I mean, who the hell is?) Sure, I regularly had the company of a medical practitioner to talk about my issues with. And then there are all the times I’ve explained what was happening in my body to my friends—like why I can’t eat certain food and can only drink water. (That’s right, no booze, no coffee!) But once everyone knows what’s going on with you and the appointments become less frequent, it’s just you and your symptoms. You get tired of telling people about it; you get bored of telling your partner about it because frankly, being “the sick one” is a fucking bummer. So after a while, it’s just you. And you walk around looking longingly at people, thinking, “Have you got what I have?” But unless you join online forums (a minefield of worst-case scenarios), you’re bumping into the corners of your new life alone.
Even on good days, I feel it in my pores that something’s not right. The clench of my jaw, the subtle tensing of my muscles. But on the outside, it’s actually not that visible. Day to day, nobody can see that there’s anything wrong with me, nobody can see that there’s this thing that I think about every single second of the day, that dismantles me so easily.
The assumption is, if you’re not talking about it, writhing in pain or looking particularly uncomfortable, then you’re fine. But after a while, after the shock and anger wane and you’re left to get on with it, you also become bored with yourself and your complaints. So you stop talking about it, and people assume you’re OK because you look fine.
That’s understandable, but I need people to know I’m not OK, and I’m not as symptom-free as I seem. They need to know for their own sake because I’m not 100 percent there anymore. A part of me has gone, and I don’t know where it went or when it will come back.
I’m still on the road map to healing, and I have no idea how long I’ve got left until I get to my destination—especially when the diagnoses continue to change. But there is patience and love and a few good (expensive) professionals who can get me there.