The experience of getting a challenging medical diagnosis is different for everyone. Learning you have IgA nephropathy may make you feel angry, confused, or overwhelmed. Or maybe you feel relieved to finally have a name for your symptoms. Most likely it’s some mixture of all these things as you process what your diagnosis means for your life ahead.
Supporting your emotional health is an important part of your IgA nephropathy management. As you navigate this new normal, know that there are tools and resources you can lean on for your mental wellness.
Processing the News
It’s not uncommon when facing a medical diagnosis to go through the five stages of grief described by psychiatrist Elisabeth Kübler-Ross. Although Kübler-Ross created the model from work with people who were terminally ill, it can give a structure for any kind of large feeling of loss in your life.
Not everyone grieves this way, but some people identify with these five stages:
Denial. You may not believe your diagnosis is true or put off doctor’s visits.
Anger. In this stage, it may feel like you need to blame someone, or like life has been unfair to you.
Bargaining. You may feel like you’d do anything to make your diagnosis go away and fixate on scenarios where you could change reality.
Depression. As you start to realize your diagnosis is real, you may have feelings of “giving up” or like there’s not much that’s worthwhile in life.
Acceptance. When you reach this stage, you begin to come to terms with your “new normal.”
The stages can happen in any order, and you may even revisit them more than once.
Where to Find Support
If you don’t already have a therapist or counselor, ask your medical team for a referral. Social workers are another type of mental health resource you can use, and they’re often connected with medical practices.
A mental health professional is trained to help you:
- Process your emotions and help you make sense of them
- Learn coping skills
- Manage your relationships in a healthy way
- Navigate everyday life with a chronic disease
- Advocate for your needs
If cost is a concern, check with your health insurance to see which mental health professionals in your area are in-network, and start there. Some counselors operate on a sliding-scale model, charging you based on what you can afford.
Support groups
Community can be healing when you’re living with IgA nephropathy. One common feeling after diagnosis is that of being alone or isolated – like you’re different from everyone you know, and no one understands what you’re going through.
A support group gives you access to others who “get it.” Finding a group where you can express your unique challenges and worries related to IgA nephropathy is an invaluable part of living with the disease. Support groups offer:
- A safe space to connect with other people living with the disease
- Education and advice about your disease
- Opportunities to join clinical trials or access to other IgA nephropathy resources
- Tools for managing your emotions
- Empowerment and advocacy skills
- A social network
To find a support group local to you, talk to your medical team. You can also find support through:
- The National Kidney Foundation (NKF). They have a program called NKF Peers, which is a telephone peer support program you can access from anywhere.
- The IgA Nephropathy Foundation offers both virtual support groups and groups via social media.
- NephCure’s Patient Connections Support Program is a network of patients and caretakers whose lives have been affected by kidney disease.
- The Renal Support Network gives people living with kidney disease access to online support groups and activities.
Healthy Emotional Outlets
Your IgA nephropathy will be a big and important part of your life, but it’s only one part of your life. Remember to focus on the things that help you feel well and bring you joy.
Get regular physical activity. Move your body daily in a way that feels good to you. That may be yoga, dancing, or a walk through your neighborhood. Try to get at least 30 minutes a day. Exercise helps lower feelings of depression and anxiety, boosts mood, and improves life outlook.
Prioritize quality sleep. As best you can, get good rest. Try these tips: Go to sleep and wake up at the same time every day, keep your room dark and cool, take electronics out of your bedroom, and avoid caffeine or heavy meals before you sleep.
Tune in to a higher power. If religion or spirituality plays an important role in your life, your connection to that belief can be a lifeline. Lean on your spiritual community for compassion and encouragement.
Keep up with hobbies. What brings you enjoyment? Make time for creative outlets, skills, or activities you find pleasure in.
When to Seek More Help
Some stress, anxiety, and depression symptoms are normal and expected as you process your diagnosis. But watch for signs that your mental health needs more serious help. Signs include:
- Avoiding friends and family
- No longer feeling interested in things you used to enjoy
- Crankiness or persistent sadness
- Trouble concentrating
- Sleep issues
- Feelings of guilt or worthlessness
- Thoughts of suicide
Talk to your doctor or a loved one if you’re having these feelings. There are many helpful treatments for depression and anxiety that can greatly improve your quality of life.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Huntington’s Disease Society of America: “The Kübler-Ross Model.”
American Kidney Fund: “How does IgA nephropathy affect mental health?”
Mayo Clinic: “IgA nephropathy (Berger disease).”
CDC: “Tips for Better Sleep,” “Mental Health Conditions: Depression and Anxiety.”
