I remember the day my life shifted dramatically. I had had weeks of symptoms of swollen joints and inflammation beyond anything I’d ever experienced or even knew existed. My doctor called my place of work and said the rheumatoid factor was positive, which meant that at the age of 24, I most likely had an illness called rheumatoid arthritis. I bravely asked her “On a scale of 1 to 10, 10 being normal, what will my life be like?” She avoided the question, not wanting to give me a specific number. But I like to know what I’m up against and so when I asked her again she reluctantly responded “If you are lucky, perhaps a six.”
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?
A few weeks ago, a friend from high school who was recently diagnosed with rheumatoid arthritis, searched the internet for information on the disease, and ironically ended up on the Rest Ministries website, where she realized she had known me newly 25 years ago from a 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] 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 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 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.
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, “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.
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 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.
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.
Recent Comments