Fair warning before you read. This story involves me crying in a bar in San Francisco.
This week, there were a couple of really great pieces about having a chronic illness that came into my Facebook feed. That, coupled with the aforementioned tears I shed on Wednesday night related to my illness made me think it was probably time to write another piece about what it’s like to live with rheumatoid arthritis.
The first time that I openly wrote about having a chronic illness was in 2012, which I’d encourage you to read. The cliff notes is that I have an auto-immune condition that is slowly eroding my joints. I had to have both my hips replaced when I was 16 because I couldn’t walk. I rode a Segway around in college rather than be in a wheelchair. I have a limp that will probably never go away, and I live with a moderate to severe level of pain every single day.
In spite of all this, I lived in Latin America for two semesters in college, and am pretty proud of my career in startups at this point. I’ve done a lot, but there are a lot of things that I wish I could do that I simply can’t anymore.
The worst part is how isolating the experience is because of how unfamiliar it is for everyone else, and to be honest the topic of conversation is a bit heavy and not everyone wants to stop feeling good long enough to engage it. If you have a chronic illness, you don’t get a choice in the matter. You simply have to live with it.
But by writing about this part of my life, I’ve found a surprising amount of strength. There is something really powerful about being publicly vulnerable about our weaknesses and shortcomings and struggles. Sharing our fallibilities with the world humanizes us, and offers implicit permission to those around us to cut themselves slack when things are less that perfect, or when they fall short of how they believe their life *should* look.
I write and publish about these things because, 1) I need to for my own sanity, and 2) I believe that other people are struggling with their own demons and if my story gives them strength or encouragement then I should share it.
Writing about it is one thing. However, I rarely like to talk about chronic illness with anyone.
I’m pretty stoic about things most of the time, and don’t really let it get me down or shift my focus. I generally accomplish this by making sure that I don’t think or talk about what’s going on with my body with most people, because if you don’t have chronic pain, it’s impossible to relate and I find the experience is rarely worth trying to explain. People try to listen as well as they can, but their responses are usually some variation of “have you seen a doctor about this?” or “isn’t there a cure?”
Yes. I’ve seen an absurd number of doctors. Spent a lot of my life in hospitals, and have spent time, energy, and money pursuing solutions across the spectrum. And no, there isn’t a cure. In a world where medicine is accessible and effective, and there is an Uber for everything springing up, some things simply do not have a solution. The only solution is you must carry the burden.
This isn’t a reality people are as familiar with as I’d like them to be, but often the only way you get to the point where you empathize with a bad situation with no solution is having been through a bad situation with no solution yourself. That’s a shitty place to be, and I don’t really wish it on anyone.
Most people are fortunate to have relationship with pain and illness limited to breaking a bone or having a really bad flu. There is a clearly defined curative treatment and as bounded context. For the majority of broken bones, you cast it and after 6-8 weeks the bone is basically as good as new. Maybe you notice a dull ache when it rains, but you haven’t lost much mobility. For the flu, you take a round of powerful antibiotics, manage your fever, stay hydrated, and you’re fine after about two weeks.
There is (currently) no cure chronic illnesses like rheumatoid arthritis. And although I stubbornly hold out hope for a cure, I have to live my life with the knowledge that one does not yet exist. Taking a round of antibiotics and having things go away is simply not a reality.
There are medications the doctors will give you that can essentially modify or reduce the inflammation and aggressive joint destruction that is happening. At best, those can reduce your symptoms in the long term, and help you manage your life better and they don’t have many side effects.
At worst, they may temporarily reduce symptoms but bring massive side effects.
For example, I was on high doses of corticosteroids to treat the symptoms of the disease (not anabolic steroids that athletes take) for a few years. Those made me feel well, but also made me gain 30 pounds in a few months and stunt my growth at age 14 (I’m fortunate I was already six feet tall). Those drugs were also the reason the cartilage in my hips rapidly deteriorated, forcing me to have them replaced with ceramic ones in order to walk again.
These are all things in my past that I generally do a very good job of not thinking or talking about because thinking and talk about these things doesn’t serve much purpose. It just makes me sad.
But sometimes that sadness demands to find an outlet. Tears will usually suffice.
This week, I was having drinks with a good friend; someone I trust an incredible amount. We hadn’t caught up in a while because of massive changes in our lives the past few months, but finally made time to get out to Wilson and Wilson, one of the ridiculously trendy cocktail bars in San Francisco that overdoses on pretense, but more than makes up for that with delicious and potent cocktails.
The conversation was going as it does between to good friends who haven’t spoken much in a month or two. A lot had happened for both of us, most of it really good, some of it rather challenging, and we were telling each other all the adventures we’d had since we last met up, and drinking really delicious cocktails in the process. I’m grateful for the alcohol that night. I needed the catharsis.
We had covered a lot of the major events, and then my friend abruptly and ask me how my body is doing. As I said, normally I would ignore this. The problem was, she didn’t ask it in a way that I could brush off or ignore like I usually do.
Normally I give people a pat answer because, as you’ve already read, the conversation is a sad one, people don’t understand it, and it just brings everyone down.
This time was different. She actually really cared and wanted to know how I was doing. She asked the question with so much empathy, and with such an awareness of how much of a struggle things can be that I couldn’t avoid the emotions of it all.
Suddenly I found myself weeping at the bar of this very very trendy San Francisco cocktail bar. I’m rarely overcome by tears, but something had turned on the plumbing to my eyes. My eyes welled up and I felt the warmth running down my face. The tears came easier than they ever have, and as much as I was slightly uncomfortable crying in the bar, I also felt the weight of a million things falling off my shoulders so I didn’t fight them. I simply set my forehead down on the bar and wept.
I wept for the way my ankle joints are frozen and fuzed together and how some of my toes are beginning to swell and feel pain. It may be only a matter of time before those bones begin to fuze together too and my feet become brittle. I wept for the way on the weekends I sometimes don’t know how to get out of bed. I wept for how helpless I feel to do anything other than put on a strong face and keep moving forward through the pain. I wept for the way pain isolates me from the rest of the world, sapping my energy and resolve, and leaving me with an experience of life that nobody relates to, but it’s a really good thing that they don’t have any first-hand experience.
All of this came streaming out of me. It was a rare moment that wouldn’t have happened without the prevailing feeling of safety of being with my friend.
Sometimes that’s what it’s like to have a chronic illness. You carry everything you can for as long as you are able, and then when you cannot carry it any further you break down for a moment to let the emotions run out of you. The tears and the blood of the moment can wash over you and cleanse you for a while before it’s time to pick up your baggage back up and start walking again. In those moments, it’s amazing to have someone there with you.
My friend graciously picked up the check and split a cab with me home. It was one of the most meaningful nights I’ve had in a little while.
So for those of you that are struggling with something, I don’t have much to say other than keep struggling. It’s better than giving up.
For those of you that are with someone who is struggling, just be there with them. Don’t offer advice or tell them how they should be feeling. You probably don’t understand and they definitely know that. The most meaningful thing is to be there with them while the tears are flowing and the pain would otherwise make them feel wholly isolated from everyone. That’s a life-affirming gift you can give.
Hope this helps.
Austin W. Gunter