Life With SBS Is Stressful, But You Can Take Action
Adjusting to life with SBS may be difficult for some, but there are some strategies that may help reduce stress.
Set healthy limits
Talk to your doctor about what you can, and should, take on, and remember that it's OK to say no to new tasks or requests. Give yourself permission to take a step away from events or people who are generating additional stress for you. Give yourself the control.
It can also help to prioritize your to-do list into two categories: “must-do tasks” and “nice to do.” Remember, you don’t have to cross off everything on your list every single day — you’re only human.
“SBS DOESN'T DEFINE ME. I CONTROL MY OWN LIFE. IT DOESN'T CONTROL ME”
- NORMA, SBS Patient
Be your own advocate
It’s only natural to experience stress when adjusting to a new medical routine, especially when it involves new medications, equipment and multiple healthcare professionals (and even more doctor appointments). Be sure you have access to the information you need to make informed decisions about your health and understand the role of each person in your healthcare team. That way, you can have more productive conversations. Come prepared to these meetings with your questions written down and don’t be afraid to speak up or seek additional resources if an answer isn’t clear.
Start this process by filling out the Doctor Discussion Guide and talking through it with your doctor.
Accept what you cannot change
When looking at what’s stressing you out, look toward changing the things you can and letting go of those you can’t. Though it isn’t easy, try to view each challenge as an opportunity for growth and resilience. And remember, even if you can’t control the situation, you can control your response.
Be good to yourself
Don’t be too hard on yourself! Remember to relax and recharge often. This can make a tremendous difference during times of stress when things get overwhelming.
Try to incorporate the following into your weekly routine to help keep stress in check:
“RASCAL, MY DOG, HAS HELPED A LOT. HE IS ACTUALLY A GREAT STRESS RELIEVER. YOU KNOW, I COME HOME AND I CAN TALK TO HIM AND I CAN PLAY BALL AND HE DOESN'T CARE WHETHER I'M MAD OR HAPPY OR WHATEVER. HE JUST LOVES ME FOR BEING ME.”
- NORMA, SBS Patient
Reach out to the SBS community
You are not alone. There are other people going through situations similar to yours, and the SBS community is full of people and resources that can help get you through a difficult time. Don’t be afraid to reach out or join a support group. Feeling understood can help reduce stress. A great resource to consider is the Oley Foundation, which strives to enrich the lives of those living with IV nutrition and/or tube feeding.