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5 Coping Tips After Being Newly Diagnosed with Illness
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I remember the day my life shifted dramatically. I had had weeks of symptoms of swollen joints and inflammation beyond anything I'd ever experienced or even knew existed. My doctor called my place of work and said the rheumatoid factor was positive, which meant that at the age of 24, I most likely had an illness called rheumatoid arthritis. I bravely asked her "On a scale of 1 to 10, 10 being normal, what will my life be like?" She avoided the question, not wanting to give me a specific number. But I like to know what I'm up against and so when I asked her again she reluctantly responded "If you are lucky, perhaps 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.
A few weeks ago, a friend from high school who was recently diagnosed with rheumatoid arthritis, searched the internet for information on the disease, and ironically ended up on the Rest Ministries website, where she realized she had known me newly 25 years ago from a high school of only 300 students.
We exchanged a few e-mails and I hope that I was an encouragement to her. This is my best advice for those who have recently been diagnosed with a chronic illness.
 Contact the national organization or foundation that supports people who live with your chronic condition and explain to them that you have recently been diagnosed and would like their most basic information for someone with your illness. They may send you something in the mail, or direct you to your website. The important thing is to sign up for a membership to be on their mailing list.
Despite the fact that you may have not had a chance to grieve your diagnosis yet will likely make this to seem discouraging, and if you begin to get things in the mail and are not ready to read them, put them aside for later. The important thing is to know that this organization will likely be the one that will provide you with the most current and objective scientific treatment options and you will want to be "in the know." As your doctors are making suggestion for medications for you to start, and you are torn about them because of the long list of side effects, these organizations will be your best source of objective information.
 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 know what some of the symptoms of your disease are so that if they do occur you will be aware that it is part of your chronic illness and not a separate chronic condition. However, don't be tempted to try to read everything you can get your hands on, as it will simply depress you! Many of the symptoms that people describe may not actually be a part of your illness experience. You don't want to get too depressed or discouraged over things you may not ever have to deal with!
 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.
 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.
Consider your own personality and how do we best be encouraged. Would it be with one person, one-on-one, over a cup of coffee? Or are you home-bound, and logging onto a website each day to receive encouragement and even prayer be most helpful? And remember, what works best for you now, may not meet your needs six months from now, and that is okay. Be willing to try new supports environments.
 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 in conclusion, be informed, set boundaries for the amount of information you will research, stay hopeful, find support through people, and search for what will get you through the most difficult of times when information and people disappoint you. Search for whatever purpose you are supposed to be discovering within this pain, and the passion for that will get you through one day at a time. And don't stop living. Keep being true to yourself, even if it's in tiny ways. As the late John Lennon said, "Life is what happens to you while you're busy making other plans."
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14 Apr 2010
Wise advice. Thank you for sharing.
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