Living with a chronic condition can be isolating. Finding a community that understands what you are going through can help.
If you live with a chronic condition, you can likely relate to the feeling that friends, co-workers, and family members just don’t understand what you’re going through.
Feeling as though the people closest to you can’t relate to your day-to-day experiences can feel isolating. This can be especially challenging if your symptoms are invisible.
When you don’t “look” sick, people may be confused when you try to express what you’re feeling or what you need. Sometimes, it can even feel like people don’t believe your experiences are real.
Members of Healthline’s chronic condition communities understand what you’re going through because they’ve been there too.
Here are messages from five community members about what they wish people understood about life with a chronic condition.
“It is difficult for others to accept your new normal. It’s not just true with rheumatoid arthritis but with any debilitating disease. Unless you’ve been through a life-changing illness, others will never really understand what it’s like to be you.
“I don’t mean this in a negative way, but you find out who everybody really is when you need them most.” — Sunflower, Bezzy RA member
“Sometimes my family acts like me taking my healthcare seriously (like making appointments, getting testing done, pursuing answers to medical health questions) is just anxiety.
“When I communicate about anything health-related, I often get responses like ‘It’s all in your head’ or ‘It’s just anxiety.’” — Anonymous, Bezzy RA member
“Mentally I feel better when I see my friends and family, but physically… that’s another story. Today I spent a few hours with a friend and I already know I’m gonna need to rest for a day or two. I’m so tired.” — @AimeeStephaniePerez, Bezzy PsA member
“It is so hard for those who don’t suffer with IBD to really understand just how debilitating it is. The fact it never goes away makes it especially hard.
“It would be easier for people to understand if it was visible, instead it’s an invisible disease.
“You can try to educate them. Going over the facts and the symptoms can help. Having your doctor talk with family members when you go in for your appointment is another way.
“Doing your own research and becoming an expert on IBD will help you feel confident explaining things to others.” — Robert Furey, Bezzy IBD member
“One thing I keep in mind is that everyone’s case is different.
“Try not to let experiences about other people you read or hear about make you think everyone’s going to go through exactly the same thing.
“The fact that chronic illnesses are so unpredictable can be frustrating, but it also leaves room for hope that it will get better.” — Rick, Bezzy MS member
When you live with a chronic condition, it can feel like every decision you make, big or small, revolves around your health.
Navigating life with a chronic condition is about so much more than managing the physical symptoms. Living with a chronic condition can impact your emotional well-being, relationships, career, and so much more.
It can inform big decisions, like where you’re going to live or what jobs you apply to. It can also guide your decisions about daily activities, like grocery shopping or making plans to see a friend.
For people who have never lived with a chronic condition, it can be difficult to understand just how all-consuming this is.
Feeling seen, heard, and, most of all, understood can make a huge difference.
The Bezzy communities get it. They’re here to help you navigate every aspect of living with a chronic condition.
Article originally appeared on June 29, 2021 on Bezzy’s sister site, Healthline. Last fact checked on June 28, 2021.
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