5 Priorities After a New Illness Diagnosis

I distinctly remember the day that my life changed forever. After a few weeks of intense swelling in various parts of my body, my doctor called to give me the lab results at my place of work. She said the rheumatoid factor was positive and that this most likely was due to the fact that I did indeed have rheumatoid arthritis. I took a deep breath and asked, "On a scale of 1 to 10, 10 being normal, what can I expect my life to be like from now on?" She tried to avoid the question, not wishing to discourage me. But I typically prefer to know what battle I am fighting, and so when I pressured her, she reluctantly answered: "If you are lucky, maybe a six."

Now I knew: at the age of 24, my life would perhaps never return to where it was "before illness." The word "normal" would be redefined. Simple activities like staying out late with friends, driving my car, sitting on the sand at the beach, or carrying a cup of coffee, would become an event and sometimes one I would be unable to complete. The carefree attitude and lifestyle that I had lived would always be overshadowed within the fog of chronic disease.

Recently, I received an e-mail from a woman who I went to small high school with of about 300 students--over 25 years ago. She had recently been diagnosed with rheumatoid arthritis, and while surfing the Internet to find information and encouragement, she stumbled upon Rest Ministries website and discovered that I was the founder.

We wrote back and forth through e-mails and I hope that my words were encouraging to her. When I think back to when I was first diagnosed, I think these are the five most important factors for one to consider upon receiving his or her own diagnosis.

[1] Get in touch with the national foundation or organization that is dedicated to supporting people who live with a chronic illness that you have recently been diagnosed with. Explain to them that you have just found out about your diagnosis and that you would like the most basic information. They may drop some brochures to you in the mail or send you to their website.

Although you might feel as though you have not yet accepted the fact that this illness may be a long-term part of your life, it is important to go ahead and sign up for a membership to be on their mailing list. You can always toss the information or save it for later when you are ready to emotionally process it. But you will find that they will have the most current and objective information regarding scientific research and treatment options. As your doctor suggests medications for you to take, and you are reading the long list of side effects--and maybe questioning their judgment--these organizations will be your best source of information.

[2] Read about your disease, but know when to stop. Unless you have some rare disorder, you will find there is no shortage of information about your illness through millions of books, websites, podcasts, magazines, and more. It's wise to glance over health and illness organization websites so that you have a good selection of credible resources to go to when you are reading for additional information.

You will want to be informed about symptoms that may occur due to your illness or the medications you are taking. So that if they do occur, you'll be able to attribute them to the actual disease, instead of having a different doctor treated as a separate condition. However, do not be tempted to bury yourself in trying to read everything you can find because it will become depressing, and many of the things you read may never even occur in your illness experience.

[3] Don't lose hope about your situation. It seems there are new scientific discoveries on a weekly basis that may change how your illness progresses or as treated. For example, I have now lived with rheumatoid arthritis or 16 years and recently had four joints replaced in my left hand due to deformities and loss of abilities. But my medical team, a hand surgeon, rheumatologist, and a physical therapist, have all said that they rarely see these kind of surgeries now due to the new family of drugs available in the last 10 years that has rapidly slowed down the progression of the disease and destruction of the actual joints.

Even if there is not an immediate cure, as we scientifically grow closer to being able to know our exact DNA, we will be able to pinpoint which medication will best treat our disease, without having to jump from one medication to another, losing months and years sometimes of our health, in order to find which one works best. Hope and a positive outlook will have a profound effect on your disease and your life. So don't give up and assume that your illness will be disabling.

[4] Think about who you would like in your life to be able to talk to about what you are emotionally and spiritually experiencing due to the recent diagnosis. The person may be someone you meet in an online forum for your disease, it could be a pastor, mentor, counselor, or even a good friend who is able to listen without trying to fix it. The most important thing is that you have an oasis where you can share what you are experiencing without feeling like you may be judged or where you will receive ignorant comments such as "no pain, no gain." Check out your local support groups for your illness, or other support environments such as HopeKeepers, which is a unique small group Christian support environment for those who live with illness or pain.

Be sure to acknowledge what your personality is like and how you prefer to receive encouragement. Are you most refreshed by being able to share with another person one-on-one? Or if you are homebound, does signing onto a website each day to receive encouragement or prayer meet your needs? Also, acknowledge that whatever you find that works best for you at this stage, may not work best in six months. Do not feel like you are stuck with your decision in how you receive encouragement. You may not yet feel ready for support group, but next year it may perfectly fits your needs.

[5] Ask yourself a poignant question: "What foundation do I have in my life that will help me through the darkest moment that I may face while living with this disease?" Although your illness may not significantly impact your life immediately, the daily pains and aches that you may experience long-term can put you on a roller coaster of emotions you never prepared for. Spiritually, you may find yourself asking "Why me?" types of questions. Even if you have not come to a conclusion that there is a God, you may find yourself speaking to Him more than usual. I agree that a new cozy blanket or a cup of hot tea can bring temporary relief, however, for those darkest moments I do not fully understand how people find strength to continue and they do not know the Lord.

During those times this is what holds me together: knowing that my pain is never wasted; that God is ultimately in control and none of my circumstances surprise Him; and that He has a plan for my life despite the limitations I face and the goals I have that I may never meet. If you are not a spiritual person, when you are facing those middle-of-the-night-blues I encourage you to look up any Bible websites like Bible Gateway and read the Psalms. You may be pleasantly surprised to find that most people who live during biblical times face hardships, depression, doubts, and yes, illnesses.

So, to sum it up, be well informed, set reasonable boundaries for the quantity of information you will intake, keep hope alive, find support through people, and then search for what will get you through the darkest of moments when the information and people you have counted on disappoint you. Discover a purpose in the pain that is greater than that which the world will tell you. if you put your life on hold completely you will have regrets later on. As the late John Lennon once shared, "Life is what happens to you while you're busy making other plans."