Five Things to Do after Your New Diagnosis
Articles - Lifestyle
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."
by LisaCopen


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.

Just recently, a woman that I went to high school with was diagnosed with rheumatoid arthritis. She was searching the Internet for encouragement on living with this disease, and ironically found Rest Ministries website. Reading about the ministry, she realized she had known me, the founder, nearly 25 years ago from our small 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.

[1] Call or go to the website for the national foundation or organization whose purpose is to support people who live with your specific chronic illness. Let them know that you have just recently been diagnosed and are searching for the most basic information regarding what to expect with your disease and where to find current information about treatment options.

You may feel torn about taking this step when you have not yet had the chance to grieve or accept your diagnosis. The sooner you can get on their mailing list, however, even if you toss or save the information you receive, the more likely you may find encouraging options for treatment. These organizations will have the most objective information regarding scientific research and up to date treatments options. Your doctor may likely suggests medications for you to begin, but as you look at the long list of side effects, you may feel concerned. These organizations will be your best source to base your decisions on.

[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 your disease did not have an immediate cure, even just knowing your exact DNA, which is on the verge of discovery, will be able to help you pinpoint exactly which drug will best treat your disease without having to switch from one drug to another and lose money, and sometimes years, while figuring out which one works best. Having consistent help and a positive outlook on living life fully despite your illness will have a profound effect on your level of contentment.

[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.

This is what keeps me together: believing that my pain is never wasted, and that God always has a purpose and plan for it; acknowledging that God is always in control of my life and that of my circumstances come as a surprise to Him; and firmly surrendering to the fact that He has any specific purpose for my life and that any limitations I have experienced because of my illness will not hinder His plans. Even if you are not a spiritual person, you will likely find yourself facing those middle of the night blues, and I encourage you to look up a biblical websites like Bible Gateway and read through some of the Psalms. If you are unfamiliar with them you may find yourself pleasantly surprised to see that most of the people who live during these times faced severe hardships, deep depression, many doubts, and yes, even chronic illnesses and disabilities.

So to summarize, choose your information wisely, set personal boundaries for how much information you will read, keep hope, find a support system, and then search for that which will get you through the darkest of times when the information and people you have relied on disappoint you. You must discover a purpose in the pain that is greater than that which our world will tell you. Don't ever put life on hold. As the late John Lennon once said, "Life is what happens to you while you're busy making other plans.

DISCLAIMER: This article is provided as information only and is not to be taken as financial advice.

Read Lisa's book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com . Sign up for a weekly ezine HopeNotes and download free 200 Ways to Encourage a Chronically Ill Friend. And tune in to Lisa's weekly podcast at Hope Endures Radio at the web site. Lots of support is available.