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.
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] 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] 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 will want to be informed about symptoms that may occur due to your illness or the medications you are taking. So that if they do occur, you'll be able to attribute them to the actual disease, instead of having a different doctor treated as a separate condition. However, do not be tempted to bury yourself in trying to read everything you can find because it will become depressing, and many of the things you read may never even occur in your illness experience.
[3] Don't lose hope. As with my illness, rheumatoid arthritis, and most others, there are daily scientific discoveries that can change the of the disease. I have lived with rheumatoid arthritis for 16 years and just recently had four joints replaced in my left hand. My medical team, which includes a hand surgeon, rheumatologist, and physical therapist, all have commented that they rarely see these kinds of surgeries anymore due to the new family of drugs in the last 10 years that has slowed down the progressiveness and destruction of the disease.
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] It's important that you have a safe place where you can talk about what you are experiencing emotionally and spiritually, while coming to terms with your new normal living with a chronic illness. This person may be someone who you have met in an online forum for your illness, or it could be someone such as a mentor, pastor, counselor, or even a good friend who is able to listen without judgment. It's most important that you find a place where you can talk about what you are experiencing without judgment or comments such as "no pain, no gain." Also, call and find out about local support groups for your illness, or other support environments such as HopeKeepers, which is a Christian support group for those 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, 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.
