The First 5 Things to Do When You Are Diagnosed with an Illness

Within days, I realized that everything in my life now be impacted by my disease and that there would be no such thing as “normal” again. Every detail of my life would change from the simple struggle to open a door, to stand from the chair, to walk across the room, or to shift gears in my car. Although my carefree lifestyle and attitude would stay imbedded within my heart and personality, it would take a back seat while I attemted to simply try to learn to function while in severe pain.
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 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.
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.
[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 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!
[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 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.
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.
[5] Ask yourself “What foundation do I have in my life that will help me through the difficulties that I will be facing?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea. As a Christian myself, I honestly do not know how people live each day with a chronic exasperating illness who do not know the Lord.
This is what holds me together: believing that my pain is never wasted, but that God always has a purpose; understanding that God is always in control and none of my circumstances are a surprise to Him; firmly believing that He has a plan for my life despite any limitations I’ve experienced or goals that I have that may never be that. If you’re not a spiritual person, you may still find yourself facing those middle of the night blues, then I encourage you to look up biblical websites like Bible Gateway and read the Psalms. You may find yourself pleasantly surprised to discover that most people who lived during biblical times also faced hardships, depression, doubts and yes, even chronic 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.
Read Lisa’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com . Subscribe to a great weekly ezine HopeNotes and get a free download of 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.
