Being Aware Of Our Privileges In The Chronic Illness Community

I was reading a conversation between ankylosing spondylitis patients, and everything seemed to be progressing beautifully — an exchange of empathy, supportive ideas, resource sharing — until someone hopped into the convo with a whopper: "I don't know why everyone doesn't just join get into the pool. I wake up, have a swim, and sometimes head back during the afternoon or before bed!"

We can't all do those things

What's that noise? Oh, that's the sound that happens when you're not relatable and you're judging others for "not just jumping into the pool." Oh, and I'm not sure this needs to be said but, most people living with chronic pain would totally do anything they could to make it better. The fact is, we can't all do those things.

This commenter happened to say that to someone who, you know, has a day job and no access to a pool. I'd seen these types of comments before: "Just get a first-class ticket! Your back won't hurt as much!" Or the tone-deaf proclamations of diet-as-holy-grail: "You should only eat organic, non-GMO, grass-fed, etc."

Hard truths

News flash: Not everyone has access to organic, non-GMO foods. There are plenty of people living with diseases who don't have access to food education, let alone the funds to buy certain kinds of food. I think back to Gwyneth Paltrow who stupidly took a "Food stamp challenge" and spent her limited funds on the makings for a salad. The reality is that there are millions of families who need to eat "bad foods" in order to survive. Not everyone has the luxury to eat only this or only that for their health or for their AS. Should we be eating well for our disease? Yes. And I try, with limited funding. But can we all do that? No.

Another news flash: Not everyone can afford a first-class airliner ticket. The average price increase for a first-class ticket is $507 bucks more expensive than Coach tickets. That's, like, a lot. That can pay for someone's medication co-pays, or, hey, a whole bunch of, hmm, organic, non-GMO fruits and veg.

The lesson: Not everyone has the same access

If you have a platform or are in a community group, it's up to you to have some self-awareness when you're sharing insight and advice for fellow AS patients. We need to be aware of this when we speak to others in our community.

The fact is, a person who is working full-time while handling an autoimmune disease is having a very different experience from someone who doesn't or can't work or is being supported by their parents. Or who doesn't have to balance the demands of financial survival with a disease that wants to destroy you.

Likewise, someone with or without kids has a whole different set of burdens. Someone with or without insurance is going to have a different experience. Someone who wants to work but can't — and is subsequently relying on the government for financial aid — has an altogether different perspective.

We all have the same disease. We are trying to connect. But how can we do this in a way that makes people seen and heard and validated?

Tips for being inclusive

We can reframe our statements so that we're not blatantly giving people advice that they have no way to take. And sometimes, the simple act of acknowledgment is enough. It's not about coddling people; it's about self-awareness and adding to a conversation rather than immediately shutting it down. 

• "I know not everyone can afford first-class, but when I fly first-class it helps my back pain."
• "I don't have a job, so I can afford to take the time to swim a few times per week. I know that's not the same for many people — but if you can find a public pool in your area, I really recommend it!"
• "I try to eat lots of veggies; I've noticed greens help me feel better."

In a way — we're in this together, but we need to come from a place of radical honesty about our privilege. When I speak to others, I try to make my privileges clear: I live in New York City, so I have access to different wellness studios, pools, and the top rheumatologists. I live comfortably, for sure. But on the flip side, I don't currently have health insurance nor do I have enough money for first-class tickets.

So, I ask: What are some ways we can transparently address our privileges in the autoimmune/rare disease communities? How can we better about using our language, compassion, and transparency when we communicate with one another? How can we make smarter decisions about how we share things?