For the Caregiver: Most of us do not know what to do when someone is in crisis or in pain and even more so those in the United States and for those of privilege. While traveling in less developed places, I have observed that people with less monetarily know what to do when someone else needs help, because they have been there themselves. They spread what they have as far as it can go and demonstrate generosity that we all should learn from.

When someone else is having a hard time we fear that we will offend in some way if we interject because we ourselves fear appearing to be weak. We are all just soft pink animals that have to live in herds to survive, but like to pretend we don’t need anybody cause… that’s cool. We are actually here to take care of each other.

The best way you can support a patient is do anything for them that would give them capacity to heal because American culture does not value or support that space. We are expected to bounce back and just be productive. We need to cultivate healing and a culture that wants to heal.

Here are some things that people that have really helped me. Most the time, these little things made room so I could take a bath or a walk.

• Running to the supermarket and sticking my fridge with healthy food.

• A friend unloaded my dishwasher, wiped down the kitchen sink, and changed my bed sheets and it was the best.

• One friend bought me a pair of slippers. As a patient, I have a lot of expenses and I feel things like slippers are indulgent (this is my own fucked up messaging of self value I still need to work on.) I wear these slippers for infusion days at the hospital and I feel more comforted and less alone.

• When I was on prednisone for many months, a friend asked me for a list of emails of anyone who lived near me that liked to cook. She organized 12 meals in a month and asked a long with the meal for people to put a few spare fresh fruit or vegetables. I could taste the love in the food that people made for me and it was one of the most therapeutic and loving things I have experienced. People snuck in notes and little chocolates. I felt connected and cared for. And the one person who did not want to cook gave me a gift card for a delivery service. I had an awesome Indian dinner one day after getting home in bad weather from a day of infusion with almost a two hour drive each way.

• Just ask if they need anything when you are already out doing a Target or supermarket run.

• I had friends organize medical paperwork and bills. Dealing with all that bullshit after being in the hospital or clinics is re-traumatizing and can feel unsurmountable.

• One friend bought me a covered hot water bottle for $10 on Amazon. Almost as good of a purchase as blow-up doll.

• I had a lot of friends take me on walks. Take a patient outside and on a walk, even if it is short.

• I have often felt overwhelmed when trying to seek out a diagnosis. People with good intentions suggest more treatments, practictioners, etc. If you have an idea, like a supplement or seeing a practitioner, do the leg work. Go buy it and deliver it or see if the clinic accepts the patient’s insurance. Even make an appointment.

• I need to hear I am doing a good job. Being undiagnosed and trying so many things is not only defeating, it is so exhausting. People with good intentions want to heal you and so they share so many ideas. I have been sensitive to that in that it feels like people think I am not doing my best. If a patents seems defensive, please remember they may be in pain or discomfort, they are scared, overwhelmed and my feel broken. Being a patient is the toughest work and on top of it, most of us have to continue to work full time to pay for the part-time job we do not want. Just remind us that you see how hard we work.

• Yes, I can still drive, but sometimes a ride to the doctor is what I need because my brain is processing a lot and thinking about parking is one more stressor.

• Being from Minnesota, where reserved, but polite Scandinavians live, I have a lot of old friends who are uncomfortable talking about what this is like for me at all. They don’t ask and we don’t discuss the potential of me going blind. I have to remember it is not me, it is them not being ready to process. On the flip side, I deeply note who asks, “how are you felling?” Just ask and then just listen to the response. Just listen to the response and remember that you do not have to fix it. Ask even when, especially when, you know someone is feeling good. Celebrate that.

• And here is my final recommendation. DO NOT EVER talk about or promise to show up in ways you cannot, do not have capacity for, or do not want to. It is completely understandable that people are at capacity in their own lives and cannot give more. However, the worst thing you can do for a patient is to overpromise and underdeliver. Isolated in the pandemic on insane amounts of Prednisone in a Minnesota winter, I was hanging on by a thread as my hair was falling out and I felt like a werewolf. The worst thing was when someone would say they would be coming to help and then not show up. Just be good on your word.

Again, this is not medical advice, but maybe there are some helpful things in these lists. Please feel free to leave other ideas or questions in the comments.