6 Rules I Live By to Lift the Weight of My Chronic Illness
Living with a chronic illness can be extremely challenging, both mentally and physically. It is a weight we wish upon no one, but I believe it is my true blessing because I see so much in life that so many miss. In my 34 years of having a chronic illness, I know everything I have become and my strength is because of the time and love others have put into me. These are my six rules I try to live by that help lift the weight of my chronic illness.
1. Life is a team sport. Never stop building it.
Sometimes it feels easier to crawl into a hole and shut people out, but we must not shut out those who give us the most strength and love. Your team is unique to you. I like the team analogy because I always say that everyone plays a different position. I understand what positions they play in my life and what position I play in theirs, and use it to my advantage. It is not selfish, it’s reality. The shoulder you cry on may not be the same person that makes you laugh when you really needed it. Know whose number to call when you need it.
2. Know when to ask for help.
The biggest team in the world can’t help you if you don’t ask for help when you need it. This is by far the hardest thing and never gets easier, but we must not dismay. The help may be from someone I feel isn’t really on my team, but maybe they possess the power to help me the most. I recommend swallowing your pride and asking. You may be amazed at how many want to help. Ask and you shall receive.
3. Tell your story.
This means something different for everyone. We are all in a different stage of telling our stories. We may just be beginning to share our real struggles with family, or we may be thinking of taking things more public. It doesn’t matter where you are on the journey — it can liberate you and lessen the need to ask for help directly. Once people know my story, they can relate better and may offer help and support in ways I never thought possible. It is scary and takes courage to share my story, but putting it into the light can be healing and bring new people into my life. There is always the fear that someone may criticize me, and if someone does, that is my opportunity to remove that negativity from my life. Your story can set your free.
4. Pick someone else up.
You live with a chronic illness; you know the struggles. You are a wealth of knowledge and know what true compassion is. Share it with someone else who is also struggling, no matter what their illness. You may be amazed at how much you share. It can be healing for both of you and can grow your team and create the most unique friendships. It all starts with telling your story and offering a hand. Your compassion could come back to you a thousandfold in ways you never expected. Pick yourself up by picking someone else up.
5. Show gratitude and pass it on.
How do we repay all those who have given us so much? In most cases we really can’t, and I don’t believe that is what’s expected of us. I can show them gratitude every chance I get and pass on the love that was given when the opportunity arises. My team will be proud to see me staying strong and sending out hope, love and compassion to others. We may feel as if we are a burden because we need so much from others. Sending out a drop of love, however small we may think the drop is, and watching it being received can invigorate your soul. Pass on what was given to you.
6. Treat your whole self.
Depression, anxiety, fear, fatigue and questions of faith are something I think everyone with a chronic illness struggles with. We work so hard on our illness that we often forget about the rest of our body and mind. Put the pieces in place to help you manage your mental, spiritual and physical health. There may be many pieces like meditation, yoga, faith, psychiatry and everything in between, but be proactive about it. Being reactive means you are pulling yourself out of a hole. Don’t fall into the holes that can hurt so bad. Put the pieces into place that can help you maintain a healthy mind and soul. You will find what works for you. You can fight, you have proven that, but make it rewarding by being happy. Don’t take it lightly. Treat your whole self.
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Joe was born with a congenital heart defect called Tetralogy of Fallot. He required his first open-heart surgery at 54 hours old and suffered a stroke after surgery. He has now had four open-heart surgeries, the last two days before his 30th birthday. He has struggled with anxiety & PTSD for most of his life and believes a strong mind and building a team with a roster full of supporters is the key to successfully living with a chronic illness. He is a Board Certified Patient Advocate for families, children, and adults with congenital heart disease—helping them to navigate the emotions, diagnoses, and challenges they face in finding and understanding appropriate CHD care.
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