It seems like every week, now, I have people messaging me to tell me that they think they have a chronic illness. And the first words out of my mouth are always, “I’m sorry.” Chronic illness of any kind is a real sh*tty thing to have to live with– trust me, I know. But there are ways to support people with chronic illness. Here are a few tips:
10. Ask how you can help…
It truly is touching to have people get, at least on the surface, how hard it is to live with a chronic illness. Know that anything from as simple as opening a jar or getting out of bed, to something as complicated as working a high-stress job, can be completely insurmountable without a community of help.
9. …And then do it.
Nothing’s worse than having the strength to ask for help– and then having your helper go M.I.A. People with chronic illness sometimes don’t have the energy or strength to scramble to tie up loose ends. Nothing is worse than dealing with the panic of cancelled assistance.
8. Keep questions to a minimum.
A lot of people who have chronic illnesses for a while are pretty upfront about the battles they’re fighting. But many people aren’t. Just like any other health concern, people will let you know what you need to know.
7. Think twice before sending “helpful” articles.
Many people with chronic illnesses stick to a routine– get up at the same time, eat the same food, go to bed at the same time, use the same laundry detergent, whatever. Getting the (oftentimes, repeated) suggestion of making changes to your lifestyle may not help. And the stress of people following up on whether or not you took their well-intentioned advice? Not good.
6. Fight the urge of one-upmanship.
I will always have compassion in my heart for people with pain and sickness, but no– your sports injury is not equal to the daily struggle with chronic illness. You might think it’s empathy to talk about your torn ACL, I just see a jerk who doesn’t get. it. #Sorrynotsorry
5. Stay away if you have even “just” a cold.
Most people with chronic illness have compromised immune systems. If you know that your co-worker or friend has an issue, stay the EFF AWAY from her while you are sick. You might feel lousy, but a cold could put her in the hospital.
4. Understand plans are always written in pencil.
A day can go from great to horrible pretty quickly when you’re living with chronic illness. The plans we made three weeks ago? We’ll always do our best to make them, an it disappoints us as much as it disappoints you to cancel.
3. Check in with us.
A “Hey, how are you?” is all in the inflection. If you say it in one specific tone of voice, we’ll know the question is sincere, and you want to know the answer. Doing this even just once a month lets a person with chronic illness know he or she has someone who actually cares.
2. Know your health politics.
Sure, as a healthy person, you can stomp your feet about Obamacare and throw tantrums about paid sick leave and everything else that we talk about on the regular. But when you meet someone with chronic illness, and you like them as a person, maybe think of their face the next time you hear HR hemming and hawing over whether or not to provide flexible work options or a better HMO for your company. These things have real world implications for real people. And guess what? Now you know someone who these things would benefit!
Sometimes we’re going to tell y0u just how bad everything sucks. And we’re not looking for solutions– we either have the solution we need, or we know one doesn’t exist. This is especially hard for spouses and partners, who are used to “fixing” things that are broken. But know this: people with chronic illness aren’t broken. We’re whole. We’re doing the best we can.