Living with IgA nephropathy
Living with IgA nephropathy (IgAN) and managing symptoms can present daily challenges, both physically and emotionally. In my experience, one of the biggest challenges of living with IgAN is the lack of awareness. It can take a toll on you when you’re explaining to friends, family, and coworkers why you may need to make certain lifestyle changes or take specific medications. For me, coping with IgAN was tough on my mental health, which can be just as difficult to manage as the physical symptoms.
Taking the time to check in with yourself
It’s easy to get caught up in the day-to-day challenges of managing your symptoms. Remember to take a step back from your daily routine and check in with yourself about how you’re feeling emotionally and physically. Here are some questions I keep in mind when checking in with myself:
- Am I experiencing any pain or discomfort?
- Am I tired or energized?
- Am I stressed, anxious, happy, or sad?
By taking the time to check in with yourself regularly, you can become more aware of what you need and will be better equipped to manage your symptoms.
Strategies for prioritizing your well-being
1. Practice self-care: Good self-care can involve things like following through with your recommended diet and taking your medication as prescribed, as well as educating yourself about your condition and staying up to date on the latest treatments and research. It can also involve getting help for your mental health when it interferes with your ability to take care of yourself or manage your quality of life.
2. Practice self-compassion: Self-compassion means treating yourself with kindness, understanding, and patience. It’s easy to get frustrated with yourself for not being able to do everything you used to do, and it’s okay to take things slow. One way to practice self-compassion is to be mindful of your thoughts and emotions. When negative thoughts arise, acknowledge them, but don’t dwell on them. Instead, try the “ask-a-friend” technique. Ask yourself, “What would I say to a friend I care about if they were in my position?” It’s important to step outside of your own perspective when you need to be kind to yourself.
3. Connect with others: Join a support group or get in touch with others who are living with IgAN. Talking to people who understand what you’re going through can be incredibly helpful and provide you with a safe space to share your feelings and get the support that you need.
4. Seek care for your mental health: Having a mental health professional on your care team can help you talk through your struggles and learn how to cope with them. Treating your mental health the same as you would your physical health can help provide perspective on when you need help. A therapist can provide you with tools and strategies to help manage your symptoms and work through any feelings of grief or loss that you may experience.
You are your biggest champion and source of support
Remember, you are your own biggest champion. By taking an active role in your health, you can feel more empowered and in control of your journey with IgAN.
— Elle, LCSW, a mental health therapist and person living with IgA nephropathy