I can vividly remember the sheer relief I felt when I got the results of my lactulose breath test back that revealed I had Small Intestinal Bacterial Overgrowth (SIBO).
After two years of seeing more specialists than I could count, I was so glad to have a name behind a lot of the symptoms that ailed me (which I still ended up being wrong about, but that’s another blog for another time). Only people that have been searching endlessly for answers about their health can fully understand what I am talking about.
It’s a moment of validation.
All the people that told you that your symptoms were in your head (and you started to wonder if they were right), labs that came back normal, and nights of suffering are all justified.
And after the inital relief comes the new reality that you’re faced with.
You have a chronic illness.
For me, about a million questions began to run through my head:
- What does this mean?
- Is there a cure? A medicine I can take? A protocol that’ll knock it out? Will it always be this way? Will I always suffer?
- Will I never be able to eat my favorite foods again? Do the things I love to do? What if I can’t hold down a job? How will we pay rent? How will I feed my family? How will I afford healthcare costs?
- Will I ever feel normal or healthy again? Is my new quality of life worth living?
It’s a lot for anyone to sort through. And that’s just learning how to deal with feeling 0/10 miserable at all times. Add in learning how to deal with social situations while feeling sick all the time and it’s a whole different ball game. That’s why I want to share five things I wish I had done initially to navigate social situations with my chronic health issues better.
1. Give yourself time to learn about your illness.
Going from living a relatively “healthy” life to developing something like IBS, SIBO, IBD, Lyme, Hashimoto’s, and/or another autoimmune disease is enough to turn most people’s lives upside down.
Namely, because there are a lot of changes that need to happen to experience symptom relief and/or to prevent a more serious health issue from developing or occurring.
Things like: medications, healthcare costs, the food that you eat, how you eat, the time of day you eat, the quantity of food that you can eat, what things are cooked in, food sensitivities, how sensitive you are to everyday household and personal care products, sleep, air and water quality, heavy metal toxicity, etc.
Overwhelming is an understatement.
So, why don’t you do yourself a favor and give yourself a break?
Anything that is new takes time. So, give it to yourself. Give yourself time to learn exactly what your illness is and what is happening on a biological level in your body, track your food, learn what food triggers you have, learn all about your poop (this can be really helpful to know and share with your doctor), learn when the best time for you to sleep is (and how long), and everything in between.
Picture your new life with chronic illness as being in “training” like you would be at a new job. You’ll eventually know yourself so well that you won’t have any issues communicating to others exactly what’s going on with your health.
2. Come up with an elevator speech.
It took me 52 takes to film a 1-minute elevator speech on my computer for my online speech class.
So, friend, I get how uncomfortable these things can be and I’m not telling you to record yourself giving a 1-minute speech about your health. (I mean, get crazy if you want to!)
What I’m referring to here is having a brief and understandable answer on hand when someone asks you what you have, how you’re feeling, etc.
I know I used to feel like I didn’t know what to say to people that would ask about my health or “what I had”. I was afraid people wouldn’t believe me or I wouldn’t explain what my IBS or SIBO was well enough.
Learning about my illness and how it was individualistic to me allowed me to naturally come up with some ways to talk about my IBS/SIBO without looking like a deer in the headlights or giving someone WAY more information than they ever needed. Except for my close friends and family…. because they usually want me to share all the ugly details.
3. Be confident.
Sam (my husband) and I went to a wedding about a month after I received my lactulose breath test results.
I was still trying to wrap my head around what SIBO even was and my symptoms were worse than ever. After traveling for 7 hours, I decided that to avoid getting any sicker, I would cook my food, bring it all in a giant cooler, and take it to the wedding. And I did just that.
When dinner time rolled around, I frantically tried to ask the caterers if there was a microwave that I could borrow somewhere, to no avail. I decided to end up just eating my dinner cold, still freshly in the Tupperware. I was still eating when everyone came back to the table, staring (uncomfortably) at me and asking what I had made and why I wasn’t eating dinner like everyone else.
I don’t love being under a microscope. So, I spent the rest of the wedding crying and we left early. There is just no way I could’ve been confident a month into my diagnosis answering these questions.
4 months later I was.
1 year later I was.
And if I went to that same wedding today, it would be a completely different experience.
When you own and are confident about what you’re doing, nobody will question it. Today, I would happily eat my cold chicken, pick something warm up on the way, or eat beforehand. And I have told so many people about my tummy troubles that I can do it in my sleep, without a hint of embarrassment.
I actually like being known as the “healthy” or “crunchy” girl now!
I’m not telling you to own your illness. Your illness is not your identity. But own your new lifestyle, your routines, and the life you’re living to take care of yourself. And be patient with yourself if you aren’t automatically confident in these things. It will come with time.Your illness is not your identity. Click To Tweet
4. Give people grace.
Have you ever said something really stupid?
If you’re a human being, chances are that you have more than once.
This is why I hate when people have elaborate wedding vows and declare that they’ll always be there for the other person and never hurt each other. It’s a completely unrealistic expectation.
Wouldn’t it be better if we knew that our spouses, parents, siblings, and friends were inevitably going to hurt us? That doesn’t mean they love us any less. It means we’re flawed human beings who are in need of a Savior — and because Jesus gives us grace, we can extend grace to others when they hurt our feelings.
We don’t always have to cut people off or gossip about them because they don’t agree with us or they say something dumb (unless you’re in an abusive or toxic relationship, then please run far from this).
Other people are not you.
They don’t know what you experience every day. They don’t know how you feel when you eat certain foods. They don’t know what an IBS flare feels like. They don’t know what it’s like to be in physical pain like you. They don’t know what it’s like to feel sick all. the. time.
I didn’t… until it happened to me.
So, the next time someone asks you a silly question, hands you a slice of decadent chocolate chip cake, or doesn’t understand why you had to miss family game night… give them grace.
5. Own and communicate what you’re feeling.
All chronic illnesses are difficult to live with, but invisible illnesses (like IBS and SIBO) add a whole new social challenge to the table.
Most of your suffering happens in private.
I’ve gone in to work more times than I can count feeling unwell and not one person was any the wiser. It’s not as tangible for people to grasp like it would be if I was walking around attached to a bunch of tubes.
This is what makes this journey such a lonely one. No one has any idea that anything is wrong with you unless you tell them… and even then, some people may not 100% understand or believe you.
That means, it is up to you to communicate how you are feeling to people. Whether it be your parents, spouse, friends, or your boss–people will make assumptions about you if you don’t tell them what’s going on with you.
Most of the time, people love you and want you to be okay. They may need some help understanding (and you may have to repeat yourself and have conversations more than once) but at the end of the day if people know what you’re going through, they’ll support you in whatever you need to do to heal and feel better. And if they don’t… you have done everything on your end to communicate and it is not your responsibility to appease everyone.
How do you handle maintaining your social life while struggling with SIBO, IBS, or another chronic illness? Is there anything else you’d add to this list? Share with us in the comments below so we can grab some tips from each other.