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Kidney diseases such as complement 3 glomerulopathy (C3G) or immune complex membranoproliferative glomerulonephritis (IC-MPGN) can have an impact on your social life. And while maintaining friendships may be hard when you live with a rare condition, it’s possible to keep your social connections strong.
Friendships play an important role in supporting your well-being and may protect your physical and mental health. Although maintaining friendships can be challenging for people with rare diseases, there are strategies that can help keep those friendships strong.
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Research has shown that having C3G or IC-MPGN can have a psycho-emotional impact on your life. Chronic kidney diseases (CKDs) can affect self-esteem, anxiety, and overall quality of life. Fatigue, swelling, high blood pressure, and other unexpected or invisible symptoms may make it hard to stay connected.
Your symptoms may affect your ability to carry out plans, resulting in last-minute cancellations. Social relationships can be harder to maintain because of this.
Plus, managing C3G or IC-MPGN will likely involve certain changes to your lifestyle, such as diet restrictions and a changing medication schedule. If you can’t eat or drink certain things, your friends may leave you out of plans that involve drinking and eating.
In one study, people living with chronic diseases reported that their friends were more likely to stop inviting them to events instead of accommodating their specific needs. This can strain friendships and make it harder to stay connected.
Finding ways to stay connected and keep your friendships strong is important when you’re living with C3G or IC-MPGN. Research shows that friendships are particularly important for people with chronic conditions. Keeping friends close can help you feel recognized and valued so you feel less alone.
To begin forging strong friendships, it may help to share information about your condition with your friends. How much you want to share is completely up to you. But for some people, this type of communication can help remove misunderstandings and boost inclusion.
Deciding how much to share with your friends may not be easy. You need to think about what to say and how to answer the questions they may have. If you feel comfortable, communicate openly with your friends and explain your situation.
You may get asked why you feel tired all the time, why you need to leave early, or why you can’t eat certain foods or drink alcohol. Preparing yourself for these questions and conversations about your rare kidney disease may make the experience easier.
Use these strategies to have a conversation with your friends about your condition and how it may impact your friendship.
You don’t need to offer specific medical details about your diagnosis. Decide how much you want to disclose before sitting down to talk to your friends about your condition. Only share what you’re comfortable with.
For instance, you may want to say you have a rare kidney disorder that impacts what you can eat and drink. In some cases, this may be enough to answer their questions.
When talking about your condition, use terms your friends can understand. Let them know what to expect going forward. This can help when you need to cancel plans at the last minute or have other limitations.
Let your friends know you may decline certain events because you never know when fatigue may creep up. Share with them that you value their friendship and that last-minute cancellations may occur, but aren’t related to your personal feelings. Explain what you need from them in terms of emotional support and understanding as you navigate your condition.
Having open communication about your rare kidney disease and setting boundaries can help you navigate your friendships. Taking care of yourself and your health is essential. Set boundaries without feeling guilty.
You may find that you have ongoing fatigue or you’re having a hard time concentrating while living with C3G or IC-MPGN. This occurs because your kidneys are less able to remove waste from your blood, leading to a waste buildup. This accumulated waste can affect your brain by making it difficult to concentrate or making you feel more tired than usual.
If you find that you’re feeling low on energy, you may want to change which social activities you participate in.
Follow these practical tips to maintain friendships and stay connected even as you decline certain invitations:
Communicating your needs upfront and being honest about your limitations can help with setting expectations on both sides.
You may find that even after communicating with your friends about your condition, you still need more support. If you feel misunderstood or you’re seeking additional support, there are other ways to find it. It can be helpful to find other people who are living with chronic kidney disease and may be in the same situation as you.
You can find online or local communities and support groups for people with rare kidney disease. Connecting with others who are in your shoes and sharing your feelings may help fill gaps in support that may exist in your everyday friendships. These new connections can coexist with your current friendships.
You can also ask your nephrology healthcare team for support recommendations. They may be able to provide you with resources that can help you connect with people who understand chronic illness. Finding support can help you get back to living a fulfilling social life.
On MyKidneyDiseaseTeam, people share their experiences with rare kidney disease, get advice, and find support from others who understand.
Have you struggled with maintaining your friendships? Let others know in the comments below.
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