I can easily can remember the day that my life shifted into a new kind of normal when I was diagnosed with rheumatoid arthritis. At the age of 24, having dealt with a few weeks of swelling in various parts of my body, sometimes to the point of being disabling, my doctor called me at work with the test results. I had a positive rheumatoid factor, she explained, which most likely meant that I had rheumatoid arthritis.
Faking confidence, I asked her, “On a scale of 1 to 10, 10 being normal, what can I expect my life to be like from here on out?”
She did not wish to answer, but after I told her I needed some kind of scale toknow what side I was up against, she reluctantly replied, “If you are lucky maybe a six.”
Within days, I realized that everything in my life now be impacted by my disease & 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 & personality, it would take a back seat while I attempted to simply try to learn to function while in severe pain.
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 my website [Rest Ministries], where she realized she had known me nearly 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:
Get in touch with the national foundation or organization that is dedicated to supporting people who live with a chronic illness that you have recently been diagnosed with. Explain to them that you have just found out about your diagnosis and that you would like the most basic information. They may drop some brochures to you in the mail or send you to their website. Despite the fact that you may have not had a chance to grieve your diagnosis yet will likely make this to seem discouraging.
That being said, if you begin to get things in the mail from the resources you contacted and are not ready to read them, put them aside for later. The important thing is that you are aware of an organization which can provide you with current and objective scientific treatment options, as you will always want to stay “in the know.” When doctors begin prescribing you to a laundry list of medications, you may find yourself torn due to the long list of side effects accompanying each medication. When this happens, these organizations may prove to be your best source for objective information that will help you decide which step to take next as you navigate your way through treatment.
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 disease progression, or more effectively treat it with different alternative therapies. 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 when and if they do occur, you will not be alarmed. However, do not bury yourself in reading everything you can get your hands on. It will simply become too depressing, and many anecdotes shared by others online may never apply to you.
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 is treated. For example, I have now lived with rheumatoid arthritis for sixteen years and recently had four joints replaced in my left hand due to deformities and loss of function. But my medical team, a hand surgeon, rheumatologist, and a physical therapist, have all said they rarely see these types 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 the destruction of the actual joints.
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 of our health and quality of life. Hope & a positive outlook will have a profound effect on your disease and your life as a whole. Do not give up, and refrain from automatically assuming your illness will be disabling.
Find someone to talk to. Consider who you wish to be able to confide in and talk about what you experiencing emotionally and spiritually as a result of your life-changing diagnosis. The person may be someone you meet in an online forum for your disease, a mentor, counselor, or even a good friend who is able to listen without trying to fix it –or even worse, you. The most important thing is having an oasis where you can share what you are experiencing without feeling judged or receiving ignorant comments such as “no pain, no gain.” Check out your local support groups for your illness, or other support environments [i.e. a group such as “HopeKeepers,” a unique and quaint Christian support group for those who live with illness and/or pain.
Also, consider your personality and how you are best encouraged. Would you feel more refreshed confiding in a friend on a one-on-one basis, or from seeking support from an online community where there are numerous others dealing with problems similar to your own? Remember, whatever works best for you at this time, may not best meet your needs in six months. Therefore, do not feel like you are stuck with a particular group. Be willing to try new forms of support to find which best suits your needs.
Ask yourself “What foundation do I have in my life to help me face the difficulties that may or may not come my way?” Even if your illness does not progress rapidly, the daily aches and pains, as well as the emotional roller coaster and spiritual “why?” questions you will have, will leave you searching for a deeper meaning in life than simply solving your problem with a cup of hot tea.
In conclusion, be well informed, set reasonable boundaries for the quantity of information you will intake, keep hope alive, find support through others, and find what gets you through your darkest moments when the information and people you have counted on disappoint you. Discover a purpose in the pain 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 said, "life is what happens when you're busy making other plans."