I became ill in my late 30s, more than 20 years ago. Like many chronically ill patients, I have complex, overlapping diagnoses, all involving pain and fatigue. In the early years, I just searched for what was wrong and what to do about it — hoping I would live long enough to find the answers. Then I spent some years trying to understand my illnesses, settle on treatment and accept the reality of my new life.
Finally, I asked the question: could it be possible for me to live well, even if I couldn’t get well? This list is my answer to that question. These guidelines have evolved over the years, and have helped me build a positive life with illness. I would adhere to them even if I weren’t sick, as they have become my personal prescription for healthy living. Here’s a brief explanation of each.
1. Take care of yourself first.
Because we're brought up to bear the children who will start out life completely dependent on us, this is especially hard for women. I’ve learned that if I want a balanced, productive life, I need to offer care, compassion and respect to myself first. This is what allows me to care for others.
2. Never, never, never give up.
Getting a diagnosis for a poorly understood chronic illness can take years. Many patients give up and settle for a life of bitterness or magical thinking about miracle cures. Disability and medical insurers play on the sick by denying legitimate claims, in the hopes that weary patients will give up their appeals. My experience has been that a determination to access comprehensive and compassionate care, and to receive the benefits to which I am entitled are causes worth fighting for.
3. Be honest about how you're feeling.
People can’t read my mind. Just because they don’t understand doesn’t mean they don’t care. I find that if I'm honest and straightforward about my condition and my limitations, without whining or complaining, people are generally very willing to be patient and accommodating toward me.
4. Enroll in the School of Whatever Works.
In managing my health needs, I've utilized and benefited from drug therapies, surgery, dietary changes, physical therapy and exercise coaching, acupuncture, massage therapy, herbal supplements, homeopathy, enforced daily rest and more. As soon as I think I have it all figured out, my symptoms change and I have to enroll all over again in the School of Whatever Works.
5. Make friends with fatigue.
I rest in bed for several hours every day. This proactive habit prevents the complete collapse that comes from wearing myself out. Instead of fighting the fatigue, I’ve learned to embrace and cherish my rest period, including that little snack and drink I loved in kindergarten.
6. Live as a child.
Kids tell the truth, ask for help when they need it, freely give and receive hugs, laugh easily, fall asleep when they’re tired and cry when it hurts. I try to follow their excellent example.
7. Step out of the box.
To live fully, I occasionally need to push the limits and step out of my little sick box. Whether it is through travel, volunteering, or learning something brand new, stepping out helps me feel more fully alive and learn new things about myself.
8. Search for silver linings.
I believe all of life’s experiences contain value, even the ones that seem bad. Being sick has taught me to be a more kind and sympathetic person, to set reasonable boundaries, to release negative people from my life and to appreciate the beauty in the present moment. These are not small rewards for searching for those silver linings.
9. Find a way to share your gifts.
I’ve come to believe that the reason we're here on Earth is to discover, develop and give our gifts. Illness did not exempt me from that purpose and obligation. I could no longer give the gifts I had been trained to give, but I could, and did, learn some new ones.
10. Be still.
I am still for a time each day because I must be.
I've grown to love the quiet and peace that abides in the stillness. Learning to be still has improved my health, enriched my intellect and opened a spiritual center that used to be swamped by the noise of living. This may be my very favorite of the top 10.