5 Steps To Take As Soon As You Are Diagnosed with Chronic Illness

So, at the age of 24, I quickly learned that my life would never return to what I formally defined as “normal”. Everything in my life would change, from how I would drive a car to the simple act of walking across the parking lot. To stand up from the floor or a chair, would become a challenge. And with it, the carefree attitude and lifestyle that I had possessed would still be ingrained in my heart and my personality. Yet would constantly be overshadowed by this fog of chronic illness?
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 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] 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] 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 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 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.
Read Lisa’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com . Subscribe to 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.
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