To my 20-year-old self,
You, yes you, put that textbook down for a minute. I have some important words of wisdom I need to instill in you. No, I’m not some old person who is going to say how good you’ve got it and how much harder it was when I was 20. That’s because I’m the 34-year-old you.
Now, before you start panicking, everything is OK and your life turns out to be pretty good. You end up marrying your nerdy boyfriend, you have the most adorable dog, you’re running a nonprofit, and you and your husband are actually building a house right now (much to your chagrin, but at least he’s thrilled about it). I’m writing because two days after your 33rd birthday you start showing signs of a rare autoimmune kidney disease called IgA nephropathy.
You’re probably trying to pronounce ne-phro-pa-thy right now. I was too. But now it rolls off the tongue with incredible ease. Several months later you’re going to have a biopsy that will formally diagnose you with this disease, but don’t worry. It’s not a death sentence, but it does start putting your life into perspective and makes you think back on your 33 years of life and what you would’ve done differently. I know right now you’re studying hard and participating in college clubs, student government, and internships. That’s all important and will help make you who you are today, but don’t let that get in the way of life. At your age I was driven and focused on my career. I wanted to be successful. I was born to be a leader. I thought my career would come first, I’d start a family when I was older, and I’d relax and travel when I retired. Getting sick changed all of this. This isn’t to say you won’t travel when you’re older. You go on an amazing trip to Switzerland right after you’re diagnosed, and go to Lofoten, Norway, about a year later. You will check things off your bucket list, but don’t wait until your diagnosis. Do it now. Your diagnosis will create an insatiable sense of urgency. I wouldn’t go as far as to say that I’m thankful for the disease (that would be crazy), but I will say that this disease lit a fire under me. No longer will I be waiting for retirement to travel or to start a family when the timing is perfect. I am doing all of these things now.
Learn to let go of control now. Being a Type A personality is good when it comes to school and career, but with this disease comes an incredible amount of ambiguity. It affects people differently and we’re still learning how to effectively treat it. A lot of your stress when you’re diagnosed is going to be around your future.
”How long will I live? What will my life look like?” I wish I had these answers, but I don’t. What I can say is that therapy and antidepressants have helped. But it’s important to let go of the things that you can’t control. For us, there’s a lot. Remember to breathe.
When you do finally get a job (and don’t worry, you will), don’t fight the fundraising positions. It will be something that you’ll fall into by chance. And while you’re not very jazzed about asking people for money, it’s not only an important skill to have for your career, but it will help with your diagnosis. When first diagnosed with IgA nephropathy, I kept asking myself—why me? While I know that this disease didn’t choose me for any specific reason, it helped to know that I could make a difference for future generations by helping to fundraise for a cure. Giving meaning to your diagnosis is helpful, and I’m grateful that I didn’t change career paths, even when I wanted to.
Lastly, take it easy on your friends, family, and coworkers. When you start telling people about your diagnosis, you’re going to hear a lot of stupid stuff from people. Things like: “At least it’s not cancer.” “Can’t you just get a new kidney?” “You don’t look like someone who has kidney disease.” Your instinct will be to tell them off, but it’s not worth it. They don’t know what to say and that’s OK. Your friends and family are coping with your new diagnosis, too. They will go through their own grieving process just like you did. So, give them the time and space that they need as well.
I hope this will get you to do the things I wish I had done, and I hope this tells you about the things I wish I had known. Live your life now.
Best,
34-year-old you
Keyaira S.
Rachel M.
María L.
Stacey B.