Today’s Crohn’s & Colitis Awareness Week post comes to you from Brian, my caterer turned boyfriend turned husband. I asked him if he’d be willing to share what Crohn’s disease is like from his side — because as much as this is my disease, he shares the pain, struggles, and triumphs in his own way. (Translation: Living with me when I’m flaring sucks.) This post is long, but it’s a good, worthwhile read if you know or love someone with Crohn’s.
I’ll let Brian take it from here…
Meeting Someone with Crohn’s Disease
When I first met Ali, it was during the production of a commercial campaign. It was my company’s job to interview her and get all of the details of her life, so I heard her story and learned that she was living with Crohn’s disease. It the first time I had heard about Crohn’s, so the only thing I knew about it was that this super hot chick we were about to cast had it. (Editor’s note: I would say I’m blushing, but really I’m laughing, because I know this story goes from “super hot” to “diarrhea” real quick.)
As the production went on, I got to know Ali better and learned a little more about her disease. At some point, I found myself deep down the Google Rabbit Hole, trying to understand what this “new” disease was.
Part of me was shocked by the symptoms of the disease, and the other part of me was confused as to how I had never heard of it before. All of me was perplexed as to how no one, including doctors, seemed to understand enough about it. None of me judged Ali, but a little piece of me felt sad for her that she had to deal with this.
Dating Someone with Crohn’s Disease
By the time we started dating, the details of Ali’s disease were out in the open. I (sort of) knew what to expect, I (kind of) understood what it was about, and none of it bothered me.
Looking back, I think part of me was actually intrigued by how someone dealing with such a shitty (pun intended) disease could remain so much fun, so perky, so happy-go-lucky. It amazed me. I would get a splinter and bitch about it, and there she was, living with a crappy (sorry) situation she had no control over. And she didn’t seem to be too affected by it. It was inspiring.
For months, aside from using the bathroom sort of often, I would have had no idea she even had a disease. And let’s be honest, what girl do you know that doesn’t spend a lot of time in the bathroom?
Dating Ali was no different than dating anyone else. Except for the part of falling in love and not being able to stop thinking about her (foreshadowing). (Editor’s note: Are you trying to butter me up or something? What do you need? Are you OK???) It felt normal.
Living with Someone with Crohn’s Disease
Living with someone with Crohn’s disease is definitely different than just dating someone with Crohn’s disease. When Ali and I decided to move in together — into a small, one-bathroom apartment — we didn’t have many secrets. She made extra trips to the bathroom, and that was it. She was, for the most part, really healthy. We lived together like any super-in-love couple would.
The bathroom side of the relationship never really got in the way, and I was actually surprised at how little I noticed it.
However, living with someone really opens up all sides of their life. You notice their habits and you begin to push emotions onto the other person — the good ones and the tough ones. (Editor’s note: Bahaha, Brian is being so nice about this. People, I am terrible. I am not a good roommate.)
What I wasn’t prepared for was what life with Crohn’s was like during a flare-up. It was like all of the minor inconveniences we experienced together pushed into bursts of 10–20 minutes, scattered randomly throughout the day. As Ali was dealing with her first major flare since we began living together, I, too, was living through it.
Living Through Someone Else’s Disease
During Ali’s worst flare-up in 2013, the tension in our apartment each day was palpable. Ali felt extremely uncomfortable and her stomach was unpredictable. Could she leave the apartment without needing a bathroom? How badly would her stomach hurt? Could she get her work done, or would she be too sick? Would she have to go back to the doctor?
These questions probably went through my head more than hers.
She dealt with dozens of doctor’s appointments, medications, sick days, running for the bathroom days, stuck in bed days, sitting on the couch days, sad days, and days just trying to get to the next one.
The tough part for me was the uncertainty of what was next. How long would this last? Would she get better? How much sicker could she possibly get?
We were both tested by these questions for months. When it seemed it couldn’t go on any longer, it did.
But then out of nowhere (probably due to the 67th medicine her doctor had her try), it all stopped. Almost out of nowhere. All of the chaos was gone and we were back to “normal.”
It was a win. Definitely for Ali, but I think a win for both of us, too. It meant we were going to be OK, Ali was going to be OK, and our relationship was going to be OK.
This wouldn’t be the last time we experienced this together, but at least I knew what to expect.
What to Expect Living with Someone with Crohn’s Disease
Here’s the deal: I can go through all of the details of what it’s like, but none of those details matter. Here’s what you can actually expect: Expect uncertainty. That’s it. That’s about as simple as I can make it.
I can only speak from my own experience as a boyfriend, as a roommate, as a fiancé, and as a husband, but if I had to guess I would say it applies to any situation where you know someone with Crohn’s. You never know what’s coming next.
Crohn’s disease is super personal and affects everyone differently. There’s no common thing that brings on a flare or causes the disease. It happens randomly and when you’re least expecting it. It can be short-lived, or it can last for months. It can be just an inconvenience or it can be a showstopper. You just need to be prepared for anything.
Now, I am no doctor and I don’t play one on TV, but I’ve seen enough of this to say that stress probably has some factor in this. I don’t think it is the end-all-be-all to this disease, but I can say that when Ali is sick, any additional excitingly busy situations seem to make the symptoms worse.
So what does this mean for you, the diseaseless person trying to figure out how to deal with or help someone with Crohn’s? It means you need to do two things.
1. Be flexible. Roll with the punches. Be cool with not knowing when it will start or stop or go away. Be OK not knowing the intensity of the experience, and you can’t take any of it personally. Remember, however bad you think they feel, they actually feel about 100 times worse.
2. Don’t add any stress to the situation. It does not help. Zero percent. Your day sucked? Theirs was worse. Help them with something they need. Don’t unload your problems onto them. Try to do things that make their day easier.
These may sound simple and trivial, but that’s the thing — with a disease this complicated and emotional, the wins come down to the simple things in life. None of this will be easy, so don’t overcomplicate it.
Final Thoughts on Dealing with Someone Dealing with Crohn’s Disease
As I was writing this, my thoughts wandered and I replayed a thousand scenarios in my head. I tried to think of any insights I could come up with that might help one other person out there dealing with this from the same side as mine. I’ve written and rewritten lots of paragraphs, and I’ve deleted entire pages. I just can’t find a way to sum up any of my experience in a simple way. So instead of a witty, beautiful ending to this diatribe, I will give you an unorganized list of things I’ve learned over the past four years.
- You will never fully understand what they are going through. Be OK with that.
- You wont find some cure for Crohn’s buried deep in the internets. Trust me, I’ve looked. I’ve read all the studies. All of them. I’m not joking. Maybe one day there will be a cure, but for now just use the internet for puppy pictures.
- Don’t try to “fix” your person. I am a problem solver, but this is not a problem I can or will solve. Trying to do so will only push the two of you apart. You can be helpful, you can provide information, you can still read all of the internet — that’s OK. Just don’t try to fix them. They are not broken. (Editor’s note: Crying. Crying. Crying.)
- Don’t take it personally. They might lash out at you or get super emotional about some unrelated topic, but it’s just because they maybe can’t express exactly how they feel inside.
- Don’t try to have all the answers. Just be there to listen.
- If you only have one bathroom in your apartment, don’t expect to have quality time to yourself in there. Learn to take fast showers and put your contacts in in the kitchen. Trust me on this one. (Editor’s note: ONE MILLION TIMES YES.)
Enjoy the good times. Soak in every moment you have when the times are good. Just enjoy the hell out of it.
- Enjoy the bad times too. During a flare-up it sucks (straight up), but that doesn’t mean you still can’t have fun or enjoy your time together. Can’t go outside? Watch a movie together. Take walks around the block (and note where the closest bathrooms are). Just do anything together. It will get better, but don’t make this time feel like it has to be negative.
- When it comes to medicine, do your research. Ali has tried dozens of medications. And this is where my Type-A personality and exceptional internet searches comes in handy. I know more about methotrexate than most pharma reps. I know what a TNF-α protein is. Know what the side effects are, why they use the drugs, how they may help, how they may hurt. You should educate yourself and your partner (just please refer to number 3 and be careful on information overload). It’s important to know what’s involved and what the risks are.
- Just be there. Be there for them. Be a shoulder to cry on. A person to listen. A smile on a tough day. They need you. (Editor’s note: Sobbing. Sobbing. Sobbing.)
- Don’t give up everything of your own. This one is hard. You don’t want to be selfish, and you want to make sure you give 100% of what you can to the other person, but if you give up everything about yourself, you will lose your own sanity. You will lose perspective and your partner needs perspective and so you do. It will be hard to balance, but you need to do it.
It’s OK to have a little space. Don’t make it permanent or for too long, but it’s OK to have a day or two apart so you can both stay sane.
- Create small wins. For both of you. Set small goals, things that are tangible that both of you can do together that you can celebrate. It could be as simple as walking a full lap around the block without a needing to dart for a bathroom. As long as it’s measurable and easy, go for it.
- Tell them you love them. This is the most important. They need to know you are there for them, that you will be there through the worst, and you’ll be there when it’s over. You can never remind them of how much you care too often. (Editor’s note: eiafjdlk wahhhhhhhhh this is beautiful)
- Look at photos together. Remind yourselves of the awesome times. It’s easy to just remember the person for what state they are currently in. It wasn’t always like that and it won’t always be like that.
- Remember it might get worse, but it will definitely get better. Even if physically it does not, just remember that anything is surmountable. It might not feel like it at the time, but if you partner up, you’ll find a way.
- Anyone with Crohn’s disease is incredibly strong. If they have made it this far in life dealing with Crohn’s disease on any level, they are likely tougher than most other people you have met. That’s amazing. Remember that, and remind them of that.
Finally, here’s something to keep in mind: You’re going to screw all of that up. You’re probably going to say something you shouldn’t or not be there when you should have, or get really frustrated. It’s probably going to happen. And it’s OK. Just recognize it and pick up where you left off. And remember how incredible a person they are, because if you’re reading this and you know someone with Crohn’s, my bet is that they are a pretty special person in your life. Go tell them that right now.
To close this off I would just like to put out there on the internet that I like to think I am a tough dude, but I can say with 100% confidence that Ali is tougher. She might show her emotions more than I do, but she is definitely a much tougher person than I am. After nearly five years, I still can’t believe how much life can throw at her and how amazingly she can handle it. She is one of the most inspirational humans I have ever met, and she amazes me every day. I would never trade a single bad day with her for a great day with someone else, because it is her tenacity and ability to overcome challenges that inspires me to be a better man. (Editor’s note: Game over for Feller. I’ll just be here, lying on the living room floor, in a puddle of my tears.)
The great news is we’ve been lucky and have had a lot more great days than tough ones — but I know that when the next set of tough days or weeks comes along, we’ll get to the other side together.
Thank you for sharing, Brian. I have so much to add, but he’s kept you here long enough, so that’ll wait for another day.
Having support from family, friends, and significant others is absolutely paramount during the bad days. During my darkest days, Brian quite literally helped keep me alive. Things that seem small to you, the supporter — like a hug — can turn an entire day around for your sick loved one.