So, it will take a while for the official test results to come back, but Dr. Google is telling me it is looking like someone I am close to is about to get a diagnosis of either Crohns’s disease or Ulceritive Colitis. Not sure at what stage and what next steps will be recommended. Any tips on how best to support them? Good web references to point them to? Experiences with different meds and navigating the approval maze (I know a lot of the more effective drugs often require trials of lower level stuff first)?
Everyone is different. Some general advice/things I notice.
I dislike when I feel people are caring more about the specific diagnosis than the experience of the person going through it. There’s this tendency for people to show support by asking ten million medical questions, and nothing else, which is exhausting. How did they find diagnosis? Could it be this? Can’t you try this? Why don’t they think this will help? Did they do this test or that test? Is it kind of like this other thing? What causes this? Did you do xyz, etc? Have you heard of this? It can feel like all anyone cares about is the medical part and not the fact that you are actually going through something difficult. I can count on one hand the number of times people have reacted to my latest news with something like, “wow, how are you feeling?” or “how are you handling that?” it is almost always just endless invasive medical questions/unsolicited suggestions. Keep treating your friend like a person and not a patient, because trust me, LOTS of people are only going to treat them like a patient from now on.
Wanting you to be normal again. This is hard and manifests in different ways, like asking when they’ll go back to work or some sport. When they’ll do xyz again, etc. Getting a lifelong diagnosis, even if it’s something mild or not life threatening, is a lot to deal with. It can feel like the whole world just wants you to get back to normal stuff and it’s a TON of pressure. Even questions like, “will you still be able to xyz?!” are super annoying. The person might not know! They might be so overwhelmed that thinking of anything is hard. Just give them time.
Ask! If a friend were to ask me, “what do you need?” when I’m in pain, it would be a huge relief. I would tell them that what I need is just normal friend conversations that are not at all medical. That’s what works for me! Too often people who have never been in a situation assume they know what they would like, and they are often wrong. Your friend might want to talk in depth about medical stuff, or they might just want to watch a stupid movie and pretend things are normal for a while, or maybe play a game to take their mind off things, or cry about how unfair it is without constant medical suggestions, or have you come over to do their laundry for them while they take a nap. Asking, “what do you need from me right now?” is so easy and so underused! You can even ask, “Would you like me to ask you for medical updates when we talk? Or is that annoying?” I had a friend ask this and it was LOVELY. I told her that I knew she cared about my condition, but that it actually made me feel worse to be asked about it. She never asked again. LOVE HER.
Don’t misunderstand acceptance. It’s really hard for people without permanent stuff to understand that acceptance is a good thing! When I say something like, “well I’ll never run again,” that isn’t me being a debbie downer, or giving up, or not being optimistic enough. That’s just…a literal fact. I will never run again. It took years for me to accept limitations, and accepting them has made my life a million times easier. Often if I say something offhand, though, an able/healthy person will argue, “don’t say that! maybe there will be a cure one day!” and it’s like…but I have to live now? So I kind of have to accept that right now there is not a cure? And that’s actually a good thing? So yeah, just generally even if they are being a bit dramatic like, “I’ll never eat cheese again!” or whatever, don’t argue. They’re working through shit.
Do offer to do actual work. It is super rare for someone to offer to take shit off your plate for you. It is far more common to get unsolicited medical advice. If you are suitably close to this person I think it’s ok to offer real tangible help! They might not want your help with medical stuff itself (I wouldn’t) but they may welcome help in other areas. When you get a diagnosis, the rest of life stuff doesn’t stop! You still have alllll the stuff on your plate that everyone else has. Once a friend cleaned my room for me after a big setback, and she did my shopping and cooking for me, and it was like the nicest thing ever. Offer to go to appointments with them and take notes, or to deal with little life crap that has been falling through the cracks (they could make you a to-do list).
Expect change. It’s normal if some days your friend is super optimistic and others they are super negative. Being able to do something one day and not the next day doesn’t mean you’re owed a full rundown on why exactly they could do x on Tuesday but now say they cannot do x on Friday. Conditions are complicated. I am often told, “Well I know someone with x and THEY can do this!” and it’s like…someone who only has half of my condition, and a super super mild case. People can get frustrated with what they perceive as “inconsistency” but which is in reality very common for most long term physical conditions. Even people with permanent spinal cord injuries have variable mobility! It can feel (though I’m sure this isn’t usually the case) like people are trying to catch me in a lie when they note “inconsistencies” like, “but I saw you carry a bag on July 4th!” and then I have to be like, “well I carried it for less than 5 minutes, and it only had buns in it, and my husband had the bag with drinks which I couldn’t even lift. This bag today is heavier because it has…” you get the picture. It’s agonizing to have to constantly explain yourself. Taking things at face value even if they seem contrary to what you would think is a great gift!
We’ve done work with https://www.crohnscolitisfoundation.org/ and they are really great.
OMG, @AllHat – thank you so much for taking the time and energy to write all that out! You win the internet today as far as I am concerned…
And thank you so much for the link, @Meowkins – that looks like a great resource!
I highly highly recommend this app to anyone with a chronic health diagnosis,
It helps you records doctor appoints and makes the records searchable. It is so good when you’re in the beginning stage of lots of doctors.
Something I’ve offered (never insisted on, just offered) and had friends take me up on is being a designated “help you deal with insurance bullshit/co-pay assistance bullshit”. It can be actually doing it for them, or just being the person that sits with them while they do it, or just gives them a list of XYZ call they need to make. With chrones/UC their is likely going to be an expensive medication that needs preauth and co-pay assistance (if they are in the US) and offering to help on that frustrating process, especially when you already have the adulting skills, really can help. I’ve been helping my friend do appeals to medicaid for a type of chemo drug her doctor wanted to use on her.
@AllHat that was super helpful, thank you. I’m currently part of a group supporting a friend going through a rare cancer (whose caretaking partner got hit and runned yesterday and broke their clavicle goddamn it because the universe is unkind) and it was helpful to read that.