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Lisa J Copen

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5 Tips for Those Newly Diagnosed with Illness
by Lisa J Copen   
Rated "G" by the Author.
Last edited: Wednesday, April 14, 2010
Posted: Wednesday, April 14, 2010

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If you have recently received the diagnosis of a chronic illness it can feel overwhelming to decide what to read or not read, who to listen to and to be able to recognize what feelings are normal. In this article author Lisa Copen and founder of National Invisible Chronic Illness Awareness Week leads you through the first 5 steps.

I easily can remember the day that my life shifted into a new kind of normal when I was diagnosed with rheumatoid arthritis. At the age of 24, having dealt with a few weeks of swelling in various parts of my body, sometimes to the point of being disabling, my doctor called me at work with the test results. I had a positive rheumatoid factor, she explained, which most likely meant that I had rheumatoid arthritis. Faking confidence, I asked her, "On a scale of 1 to 10, 10 being normal, what can I expect my life to be like from here on out?" She did not wish to answer, but after I told her I needed some kind of scale to know what side I was up against, she reluctantly replied, "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 exchanged e-mails a few times and it is my hope that she found them encouraging. When I reflect on what I would've liked to have heard from someone who has lived with a chronic illness for years, upon my new diagnosis, these are the five things I find of most value to pass along.

[1] 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.

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] Set boundaries with yourself about how much you will read about your disease. There are millions of websites, books, podcasts, and magazines, which will tell you how to treat it, cure it, and what alternative treatments to try. Spend a short period of time looking over credible health organization websites so that you know where to go to find helpful information when you need it.

You should be aware of some of the symptoms that may occur because of your illness so that if they do occur, you can attribute them to it. However, don't bury yourself in reading everything you can get your hands on. It will simply become too depressing, and many of the anecdotes that other people share may never apply to your life.

[3] Don't lose hope about your future. They are consistently new scientific discoveries that can and perhaps will change how your illness will progress and will be treated. For example, I recently had four joints replaced in my left hand due to the deformities of rheumatoid arthritis in the last 16 years. But my entire medical team, a hand surgeon, rheumatologist, and physical therapist, all commented that they rarely see these kinds of surgeries now due to the new family of medications available which have slowed down the progression of the disease and the destruction of the joints in the last 10 years.

Even if a cure is not on the immediate horizon, as we come closer to knowing our exact DNA, we will have the added benefit of knowing precisely which medication will best work for our body without having to jump from one medication to another, trying to figure out which one will work best. There is always hope and a positive outlook can have a profound effect.

[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, "What kind of foundation do I have that will help me through the dark moments that I will be faced with this disease?" Even if your illness does not impact your life significantly and rapidly, the daily pains and aches that you will experience, can set you on a roller coaster of emotions. And spiritually, you may find yourself asking "why?" questions--even if you do not even truly believe there is a God. I am a firm believer that a cup of tea or a new blanket can give us a much comfort, but for those deep valleys of emotional turmoil, I do not understand where people find their strength if 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."

Web Site: Rest Ministries Chronic Illness Pain Support

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