I distinctly remember the day that my life changed forever. After a few weeks of intense swelling in various parts of my body, my doctor called to give me the lab results at my place of work. She said the rheumatoid factor was positive and that this most likely was due to the fact that I did indeed have rheumatoid arthritis. I took a deep breath and asked, “On a scale of 1 to 10, 10 being normal, what can I expect my life to be like from now on?” She tried to avoid the question, not wishing to discourage me. But I typically prefer to know what battle I am fighting, and so when I pressured her, she reluctantly answered: “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.
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.
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 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] Find someone to talk to about what you are emotionally and spiritually going through. This person can be someone you meet in an online forum for your disease; it could be a pastor, counselor, mentor, or even a good friend who is willing to just listen. The important thing is that you feel you have a safe place you can discuss what you are experiencing without being judged or simply told “life isn’t fair” or “no pain, no gain.” You may want to check out local support groups for your illness, or other support environments such as HopeKeepers, which is a unique Christian support group 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 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 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.
