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.
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 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] 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] Know when to stop reading about your disease. There are millions of books, websites, podcasts, and more which will tell you how you can cure it, delay the progression of the disease, or most effectively treated with alternative treatments. The important thing is to glance over critical health and illness organizational websites so you are aware of where you can go to find 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 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.
Also, consider your personality and how you are best encouraged. Would you feel most refreshed by sharing what you are going through with just a friend, one-on-one, at a coffeehouse? Or are you homebound, and signing onto a website every day to receive encouragement and prayer would be beneficial? Remember, whatever works best for you at this time, may not best meet your needs in six months, so do not feel like you are stuck with a particular group or mention. Be willing to try new forms of support to find which best works for you.
[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.
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.
Read Lisa’s book, Why Cant I Make People Understand? Order at WhyCantIMakePeopleUnderstand.com . Subscribe to a 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.
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