Ways to Support Your Chronic Illness Friends
When I started this blog, I actually had a friend request a blog post at some point about how our healthy friends can best support us. Perhaps a list of dos and don’ts. I was actually very touched by this request. It reminded me that your supportive loved ones do want to know how to best support you through this process, but since they do not live in our shoes, they don’t always know the best way to do that. I’ve done my best to compile some simple suggestions, but feel free to leave your own in the comments for others to see!
Never make your chronic illness friends feel bad if they can’t attend a social gathering. We want to, I promise. If we have to cancel, it is because we physically do not have it in us to get off the couch that day. Maybe it’s an infection or overwhelming fatigue or miserable joint pain. Just know that we are not being flaky or avoiding you; we are just unable to function in public that day. We also already probably feel pretty guilty to have to cancel. If you want to find an alternative way to socialize, you can always ask us if we’re feeling up to company that day, and if so, what kind of activity we are up for.
Please keep inviting us. In my sickest times, I worried that every time I was too sick to visit with friends would chip away at the friendship and that eventually, these friends would just stop inviting me altogether. It did happen with some friends, honestly. I was really hurt by the exclusion, and this can be one of the most isolating aspects of illness. I know that I’m asking you to put your own pride aside when I say this, but just keep inviting us, even if we hit a rut for a long time where we cannot make it.
Don’t suggest anything that you think may cure or treat us, unless you have a medical degree or unless we ask. Trust me when I say that my doctors have worked very hard to treat me, and they are specialists in treating this particular disease. It is extremely off-putting when someone I know tries to sell me their products like essential oils or vitamin supplements by saying things like “I bet this will cure all your health issues.” To be perfectly honest, I find it to be a somewhat predatory sales practice to use someone’s illness to try to push products on them. If I approach you for suggestions to help with a certain side effect or symptom, it is totally fine to share your opinions. If you want to approach me for a sale the same way that you would your healthy friends, that is also totally fine. We are constantly bombarded by suggestions from people that aren’t on our medical team, and it is an exhausting cycle.
Please avoid socializing with us when you are sick, even if just mildly ill. Many of us are immunocompromised because of our illness OR because of the medications that treat our illness. Your mild sore throat or runny nose can turn into a much more severe illness for us. This does not apply only to the current COVID-19 pandemic. This goes for strep throat and colds and the flu and anything else. Just tell us you aren’t feeling well, and leave the decision up to us whether or not we can socialize with you. It makes me feel so respected when my friends or family actively consider my health when they aren’t feeling well.
If you are checking in on how we are feeling, show genuine interest in the question and response. We get asked a lot about how we are doing, but I feel really defeated when I watch that person’s eyes glaze over mid-conversation if I give them an honest answer. A lot of chronic illness patients will answer with “fine” or “I’m doing okay,” because we have noticed that a lot of people ask the question “how are you” simply as a polite formality. Sometimes, just rephrasing the question will show much more sincerity and will likely get you a more honest answer. You can try something like “has your treatment plan been effective lately” or “have you been experiencing a lot of flares” or something else just slightly more targeted and specific.
Do a little research on our disease. I don’t need you to know all the intricacies, but I will be extremely touched to know that a friend took the time to learn a bit about it. We are happy to share resources to read, but most reputable sources like disease-specific non-profits and well-known hospital systems (Mayo Clinic, Cleveland Clinic, Johns Hopkins, etc) will also have good basic info that you can find with a Google search.
Help us advocate. This is especially true if the chronic illness is a rare disease. Come to our fundraising events, our 5ks and walks, our silent auctions. Volunteer to help us plan these events or work the day of, if you have the time to spare. We know that not everyone can drop major donations for us, but just your time or presence helps us feel supported. It helps us to raise awareness, and trust me when I say this: it is so much easier to raise money or pass legislation for a disease that people are aware exists. If there is a bill in our state legislature that could drastically help us with access to treatment or other things, hear us out on it and help get the word out. If there was something in the legislature that could make your quality of life better or even one day save your life, you can bet I would return the favor in a heartbeat. We work really hard on advocacy to even get these bills put on the table, so it is exhausting when those around us don’t put forth a little effort to help us get it over the finish line.
If we have a treatment that is something other than a pill, offer to sit with us for it if you are able. I do infusions in my house every week. I find that my loved ones have a somewhat better understanding of how illness affects my life after they have witnessed an infusion. It usually prompts a lot of questions and a pretty great conversation. If your friends do any unusual therapies that don’t include a pill, it may be an enlightening experience for you to witness. Not every patient will be comfortable with having friends be there during their treatments, but the offer shows genuine interest in understanding what we experience.
There is no perfect guide book to having a chronic illness or having a loved one with a chronic illness, but any of your actions that are sincere and well-meaning will be appreciated. We just need you to keep being there for us and keep including us, especially when we are in a health rut. Friendship is ultimately a reciprocal relationship too though, so please let us know if there’s some extra care that you need in return.
Chronically yours,
Jen
