Permission to Thrive Chapter 2: Build Your Support Tribe
NOTE: April has taken the time to compile her experiences and life lessons as a nephrology nurse and person on dialysis into a book that she shares with the renal community free of charge for download. She has given MEI permission to serialize the book once a month in KidneyViews—and we hope you will share the link with others who will benefit from her wisdom, compassion, and empowerment. A course and workbook are in progress as well, so watch for those!
Any chronic illness is hard to fight alone. I encourage you to identify and hold close to those that are in your tribe of supporters. This may include your spouse, significant others, children, neighbors, or your religious community, if applicable. The point here is to lean on them as needed. Losing a second kidney transplant was a very low point in my life, but this is where I sought help from my support tribe. I realized that this was too big for me to handle alone.
Some people living with a chronic illness may blame thеmѕеlvеѕ оr оthеrѕ for their current condition and ѕituаtiоn. You may fault уоur dосtоrѕ fоr nоt сuring уоu, аnd еvеn уоur friеndѕ аnd fаmilу fоr nоt undеrѕtаnding уоu оr rеѕроnding tо уоu thе wау уоu wаnt thеm tо аt thаt раrtiсulаr роint in timе. This is not the time to push people away. One thing to remember is that the people that love and care for you are processing and going through this with you. Sometimes, they may not know what to say, to ask, or to do.
Many relationships have suffered when one of the parties is diagnosed with a chronic illness. The key is communication. Be clear, open, and honest about the feeling of your illness. Encourage your family and friends to do the same. If you are married or dating, share with your significant other the insecurities, anxiety, and or fear you may have. You will find that your family and friends will worry. It will be easy to feel like a burden on them. That is a negative feeling that often surfaces when you have a chronic illness and require help than you are used to receiving. Tell your support tribe how you feel and what you need. If you find it too difficult to talk directly, write letters. Writing is cathartic and will help you express what is on your mind when you can't articulate it verbally.
During this time, I reached out to one of my sisters, and she, without hesitation, relocated from California to Virginia to live with me for the year my now-husband would be deployed. I also sought help in the form of talking to my dialysis social worker. Just her listening to me and encouraging me to stay connected to loved ones and friends helped. I was angry at what seemed like all of the time, but I gradually worked through the pain and anger and started feeling better after a few weeks of talking. While adjusting to my new life, my support tribe is and has been there every step of the way.