7 Years of Becoming Chronically Patient

February marks 7 years since I first became chronically ill. I’ve rewritten this blog a million times, because what do you say to sum up 7 really hard years!? 

One of my favorite songs recently has been “God is still here” by J. J Heller. The chorus says “What if the world doesn’t end when the fears come true? What if we have what it takes to make it through?...What if God is still here in this desert? God is still here in this desert too” Quite honestly I think this sums up the last 7 years best. So many of my fears have come true, yet God has continually met me and provided in ways I couldn’t imagine.

Chronic illness changes you. It makes you look at our world differently. It creates challenges you never imagined facing. It creates opportunities to learn and grow in ways you never thought possible. It makes you face deep grief and sorrow, while simultaneously providing opportunities to experience deep joy. 

7 years ago, I was so young and so naive. I was going to change the world and nothing was going to stop me. I thought in so many ways I was invincible. Never did I imagine, one day I would wake up sick and never get better. 7 years ago I started learning first hand what it meant to be chronically patient.

It means learning to wait for testing and treatment, waiting for appointments, not giving up when there isn’t a clear answer as to what's wrong, taking time to find kind and wise specialists, and waiting on insurance to do their job. It means trusting that God is in control even in the pain and chaos, being patient with friends and family when they don’t understand, choosing to find joy in the mess, and not giving up hope. Being chronically patient didn’t come naturally to me, believe me I am not a patient person. Yet God has given me the strength needed to be patient (and given me plenty of opportunities to practice).

I would have never chosen this road but so much good has come through the pain.

If you are new to being chronically ill this is my advice-

1. Find a good PCP. You're going to need a doctor who will advocate for you, believe in you, and be there for every question you have. I cannot imagine surviving the last 7 years without my amazing PCP.

2. Be patient with your family. This is all new to them just as it is to you.They are going to say things and probably do things that aren’t always helpful. They are learning. Family is the most important thing, don’t forget that. 

3. Don’t stick with any specialist who isn’t a good fit for you. The top doctor in the world may not be right for you. Never sacrifice knowledge for empathy, they aren’t mutually exclusive. It took years for me to find the right specialists for my team, and now I can’t imagine handling this illness without them. Having a team of doctors who truly care about your health is priceless. 

4. Learn healthcare lingo, especially insurance lingo. When advocating for yourself or fighting insurance bills, you are often taken more seriously when you know the language.

5. Be patient with yourself. Chronic illness isn’t easy. There will be ups and downs. Don’t stress over every flare or every trigger, they are bound to happen. Learn to give yourself grace and don’t be afraid to ask for help.

Thank you to everyone who has stuck by my side and supported me the last 7 years. I am so grateful for each of you. Here’s to another year of learning to be chronically patient.

Disclaimer-

All information provided on this blog is for educational purposes only. Always consult your healthcare provider and/or your insurance provider for your specific situation. This blog does not offer medical advice.