Sunday, June 29, 2014


Yeah, yeah, I'm still here. Bad news is I'm starting to become lucid, too. It's always best when you're relatively unaware (or unconcerned) with what is going on due to high amounts of painkillers and other kinds of mind-altering drugs.

So, out of boredom I am going to write a post that I've been meaning to write for three years now. I have not written it because I didn't want to come across as rant-y or unappreciative or didactic, or any other kind of adjective that is unlikeable to the masses. But the thing is that I have a lot of experience in this area and a lot of people (fortunately) don't. My dad has undergone 7 major surgeries, spending months in the hospital and years in acute care, so I have vast experience as an observer, family member and advocate. I have had UC for 11 years and have undergone 5 major surgeries, spending a total of 3-4 months hospitalized, so I also have an intimate insight as a patient. What I want to write about is this:

What do you do when a family member or friend is sick, hospitalized or recovering from surgery?

Again, I am only writing this because I see the blank look of "I very much want to help, but have no idea what to do" on so many people's faces. And rightly so. If they and their families have been blessed with good health, why would they know what to do? I just think it's downright helpful and from a patient's perspective (I have many IBD friends!), so many of us say the same things over and over about what we expect and/or need from all you healthy people out there. So, here are the "Top Ten" things you need to know:

1. Reach out!!!!! Don't be afraid of saying the wrong thing. Send a text, call, leave a voicemail, send an email, leave a Facebook post or message. It doesn't matter your method, it's just very important that you do. It makes a patient feel like a million bucks when you do it, and if you're close to said patient, it definitely does NOT go unnoticed if you don't.

2. Don't expect a response!!! We are often overwhelmed by taking care of our substantial needs for rest and by the amount of people reaching out. We LOVE to listen to the VMs, read the texts and emails, but we'd be spending all of our days responding and picking up the phone rather than recovering and resting if we responded to everything. Trust me- your notes get read and they are SO appreciated.

3. Don't ask, "what do you need?" - I will never, ever ask anyone for anything, and a lot of patients are like this out of pride, embarrassment, or just a genuine sense of not wanting to bother anyone. JUST DO IT! Which takes me to my next point…

4. Drop off a meal, show up and babysit, or if you have no time to cook, send over a gift certificate for a pizza. It's so hard on a family trying to not only take care of another family member, but to also juggle all the essential tasks that "down and out" family member is not capable of doing. Trust me, just show up with something helpful to offer. It shouldn't cost much or take much time, but it goes a lot further than an expensive gift and is much more appreciated!

5. Don't forget about a patient's family. Sure, surgeries and chronic illness are hard on a patient, but they are even harder on a family. Call the patient's family and see how you can help, or as stated in #4, just show up at THEIR house and do their dishes or let them escape to the grocery store for an hour. Give them just a little time to feel human.

6. Always call before a hospital visit - this is especially true in those days when you are freshly post-op. I know that I am never up for visitors in those first few days. Your rest is too important and you are just feeling too downright out of it to interact with anyone- but that's just me. Others may definitely be up for a visit. Towards the end of my hospitalizations I am dying for visitors- but a 9pm visit is never exactly, well, welcomed by me no matter what the stage of recovery. All of you that have spent time in hospitals know what those nights are like!

7. If you can, stop by the hospital! Now, the hospital is not always close and everyone is super busy in their lives and of course this is not always possible or, as mentioned, even necessarily wanted by the patient. But when your jailed up in your room for a week, nothing can cheer us up more than an hour-long distraction from a loving friend or family member. It goes a long way in showing how much you care.

8. Keep your anxiety to yourself! We're the ones in the hospital with tubes shoved up all of our orifices, we have enough anxiety in our lives, so leave yours at home please!

9. Ask questions!!! It shows that you care about what is going on and if you don't ask questions, at least don't make assumptions. When I've been NPO (no food or liquids) for 10 days and come home to have my first meal, I don't need anyone asking me, "should you really be eating that?" Be an informed family member and friend.

10. We like presents. Especially ones that matter. Flowers always cheer me up, don't get me wrong, but a small donation to Team Challenge (that probably costs less than that bouquet) means much more, or go for a run and donate the proceeds to CCFA in the patient's honor through Charity Miles, or cook a meal so the family has one less thing to worry about. These are all things that make a real difference. What we patients really need is a CURE and on a very practical level, we also need some food in our bellies. It shouldn't cost much, but think of a way that you can make a gift that matters.

As a last note, just don't do nothing. You don't need to do all 10 of these things, of course, but just a card in the mail or offering an hour of your time to help out goes a LONG way. We're all busy, of course, but just remember that these are the times when friends and family are needed most!

Thank you, thank you to all of you for the absolutely overwhelming outpouring of love and friendship over these last couple of months. This was in no way in response to a lack of receiving all of these very cherished gestures, but quite the opposite. I'm really writing for those blog readers out there that aren't as lucky as I!

Feeling very lucky and loved,


1 comment:

  1. I'm a big fan of the diagram & ideas here, for Do & Don't guidance: