The importance of community for those with chronic illness

Finding people to relate to

For a while, I never spoke to another person with my disease. I had so many complex feelings and fears about CVID after I was diagnosed. I felt like it was this “weird” thing that suddenly made me different than all of my friends and family.

Having a rare disease is a strange experience because it means that there aren’t many others walking the same journey. Luckily, modern technology and social media have allowed us to find and connect with others, which is extremely important!

In whatever hardship you are facing, connecting with others who are enduring similar challenges provides a unique form of support that extends beyond the reach of medical professionals. Sharing experiences, coping strategies, and practical advice with those who can truly understand the daily struggles can foster a sense of camaraderie and empathy. This shared understanding helps those with chronic illnesses feel less alone in their journey, validating their emotions and experiences.

Also, the search for a community of like-minded individuals can empower those with chronic illnesses to become advocates for themselves and others. Finding a supportive community can offer a platform for raising awareness, dispelling misconceptions, and promoting understanding.

When I started talking to other young adults about navigating life with CVID, it instantly made me feel so seen. I was afraid that I would never be fully understood by others. But, I have a connection with others that is so unique and uplifting because of this disease. It has opened my mind and I truly believe it has given me a new perspective on the fragility of life.

The connections can go beyond just CVID – speaking with those who have faced various kinds of chronic illness and mental health struggles has been extremely enlightening. I have found a sense of community where my feelings are validated and I am empowered to keep raising awareness and speaking about my journey.

It’s no secret that life is hard. I have spent many days trying to convince myself that I’m fine and that I am being “dramatic.” But all feelings are real and they shouldn’t be hidden from the world out of fear of judgement. Chances are, sharing your feelings will allow you to find others who have been through the same things you have!

If you are a young adult (age 18-30) with CVID, you can join the Facebook group here!

Joining this group has been extremely helpful, especially since we started a group chat on Messenger. For Christmas this year, we did a secret gift exchange where we sent each other presents. There are people from multiple different countries, which is really cool! I am so grateful for the people I have met there.

It has been helpful to be able to talk, vent, and ask questions to each other. It’s nice to discuss life with people who really understand what it’s like to have CVID and deal with constant doctors’ appointments, treatments, and recurring illness. I was so relieved when other people said they dread their SCIg treatments, because I always do!

If you are a young adult with CVID, I highly encourage that you check this out.

If you have CVID but are not young adult, or you are the parent of a child with CVID, there is a more general group which you can find here. I love how people in this group encourage each other and answer questions. I believe that it is especially helpful for those who are recently diagnosed, because that period of time is so scary. I didn’t seek community for at least a couple of years after I was diagnosed. I was so used to hiding and belittling my own feelings.

You are not alone!

Chronic illness can be very lonely and isolating. The depression and anxiety that can come along with it is crippling. It is easy to convince yourself that you are the only one feeling this way. But, there is someone out there who is experiencing a similar journey, and connecting with them is the best feeling.

Don’t be afraid to ask for help. And remember to give yourself grace!