The value of patient communities | IgAN Connect

The value of patient communities


Elle, LCSW and a person living with IgA nephropathy

 Having IgA nephropathy (IgAN) can sometimes make you feel as if no one understands what you’re going through or that you’re a burden on those around you. Being part of a community of people can help normalize these feelings by giving you the opportunity to vent your frustrations, share your fears, and celebrate your victories with people who truly understand. When you connect with others who have similar health experiences, you can learn so much. You can find out what treatments have worked for them, what doctors they recommend, and what lifestyle changes and coping strategies they use to help better manage their symptoms. The information you gain, connections you form, and support you find through a community are extremely valuable. Especially when dealing with a rare health condition like IgAN, because there might be a lack of information on the disease, whether it’s coming from your doctors or people you know.

Expressing a shared commitment

One key benefit of being part of a patient community is that it allows people to come together and express common interests. We understand the challenges that come with being a patient from navigating the healthcare system to coping with difficult emotions and physical experiences. Establishing a shared commitment to patient needs can take many forms. Sharing experiences with each other can help us feel less alone and more supported. It’s important to help each other maintain a sense of identity and hope while dealing with IgAN.

 One of the most special things about a community is how everyone embraces each other’s spirit, character, image, and pride. Spirit is what gives us hope, strength, and the will to keep going, even in the toughest times. Dealing with IgAN can make it challenging to maintain a positive spirit but being part of a patient community can help you embrace it. It can be easy to feel like there is no light at the end of the tunnel, but when you’re part of a community of people who have faced similar health struggles, it can change your perspective. A community also embraces your character and image. Maybe your physical appearance has changed because of IgAN or it has affected your ability to do certain activities. In a community, there isn’t judgment based on how you look or what you can or can’t do. You are accepted for who you are and encouraged to be yourself. When it comes to pride, patient communities are full of it. They help you feel proud of all that you’ve overcome so that you can embrace the strength gained from your experiences, especially when looking back on your mental and physical scars. Each scar tells the story of all you’ve been through and is a testament to how strong you are and your ability to persevere.

A vital element to living a healthy life

Being part of a community can be essential to a healthy life. It provides you with a sense of belonging and offers opportunities to build friendships with others who understand and support you through tough times. A community can help you overcome challenges that you may not have been able to overcome on your own. One of the most amazing things about community is that it serves as a consistent reminder that you are more than your diagnosis. You can work through the challenges you face and still strive to live a fulfilling life.

My experience with the IgAN community

When I was 26 years old, I was diagnosed with IgAN and kidney failure at the same time. The shock was overwhelming. I never thought something like this could happen to me. My whole world was turned upside down in an instant. I felt a wave of emotions, particularly feelings of fear, confusion, and uncertainty about my future. I didn’t know what to do or where to begin, but at that time, the social worker at my dialysis clinic suggested I attend a local support group for kidney patients that she thought might be helpful.

At first, I was hesitant. I didn’t think anyone would understand what I was going through or be helpful. But I decided to give it a try and it turned out to be exactly what I needed. They understood my fears and worries, and they shared their own struggles with kidney disease. They didn’t care that I was younger than most of the people in the group or that some days, I just didn’t feel like talking. They accepted me for who I was and where I was at, and they helped bring back the hope I had lost. Through my support group, I also learned about other kidney organizations. Being part of various organizations and programs has made a huge difference in my outlook on life. Knowing that I have support and many people to turn to for advice or help has been invaluable to my physical and emotional health.

Find your community today – A leap of faith

Being diagnosed with IgAN can be scary and difficult, but you don’t have to go through it alone. There are people out there who can help, who understand what you’re going through, and who will be there for you when you need advice, encouragement, or just want to be heard. If you’re living with IgAN and feel alone or overwhelmed, I encourage you to seek out a community of people to help you navigate the challenges of your IgAN journey. Whether it’s an online support group or an in-person meetup, these communities offer knowledge, support, and connection. If you have been diagnosed recently, or if you have been coping with kidney disease for some time, there is a community for you. I hope you will take that leap of faith to find one. Stay connected to the IgA nephropathy community and sign up for the latest support resources here.