"I had to stop cold in order to wake up."
M.E.A. McNeil, author of The First Year - Rheumatoid Arthritis: an Essential Guide for the Newly Diagnosed speaks of the RA flare that trapped her in bed, "unable to turn over ... watch television or read" with gratitude.
Mea, as she's known, was diagnosed in 1993 after several years of symptoms, primarily in her feet. That was 15 years ago -- medically the dark ages for RA. The information pamphlet given to her had the word "arthritis" written in a shaky hand and when she went to a lecture about her disease, the message was dire, involving excessive fatigue, misshapen joints and no effective treatment. She said: "I cried all the way home."
Increasingly unable to walk, Mea started using a wheelchair -- the progress of her disease followed the prognosis from the lecture. And then she was offered to take part in a study for a new drug called Enbrel at the University of California, San Francisco. Unfortunately, she "drew the short straw and got the subclinical dose." Unable to take any other medication due to being in the study, her RA continued to flare, causing intense pain and swelling -- "my left knee was the size of a cantaloupe." Once the trial was over and the drug was cleared for use, she started Enbrel, accompanied by a small dose of Methotrexate and experienced what she calls "a dramatic remission." And dramatic it was. Within five days, she was back on her feet.
The experience changed her. The flares changed her body -- in the book, Mea calls herself "a crooked tree." But who she is emotionally changed as well. During the experience with the intense flare, she says "all I did was lie there, my body was essentially gone and there was this sense that there was something left and the something that was left was a core of spirit." Coming out on the other side, Mea believes herself transformed for the better, that the gift given by this experience was a drastic shift in perspective, a realization that she had "a lot less to deal with psychologically."
Mea's book is one I wish I'd discovered years ago. A comprehensive guide to adjusting to life with RA, it covers the medical (immune system, medication, nutrition, selecting a medical team), the emotional (adjusting to change, finding hope) and the fun stuff (travel, intimacy, socializing). An invaluable resource for those new to the disease, Mea says "I was really writing as much for myself having had a long-term diagnosis ... so I thought I'd address the book to people who have RA period." She succeeded - First Year also offers a refresher course, and perhaps a new way of thinking, for those of us who've been in the trenches for years.
In light of Mea's personal journey and her depth of knowledge acquired through the research for the book, I asked if she were diagnosed today, what three things would she most want to know. Here's what she had to say:
There Is Effective Treatment Available.
"The prognosis has changed radically," from the days when Mea was first diagnosed. If she were diagnosed today, she said, "I shouldn't subject myself to reading the death knell that is tolled in so many books that are not that old, that it is no longer a debilitating disease." Mea also emphasizes that the meds that can make the difference between significant damage to joints and being relatively unaffected are not limited to those who have the money to pay for them. Drug companies have programs available for people who can't afford the drugs through e.g., the ENcourage Foundation (Enbrel) and Remistart (Remicade) - a detailed list of programs can be found here.
RA Has As Much to Do with Your Mind As Your Body
In the book, Mea discusses the mind-body connection. "[T]he immune system is very much connected to brain chemistry" and the ability to connect to hope is a major ingredient in living well with RA. Mea told the story of asking her rheumatologist about a particular alternative remedy. The doctor replied "the disease waxes and wanes, so you meet a lot of people who are going to swear that they definitely got better when they took one thing or another ... you may as well feel better when you see a yellow Volkswagen." She continued "on the way home, I saw a yellow Volkswagen and ... I felt better." This is not to say that alternative remedies don't work, Mea has tried many and has had the most success with acupuncture/acupressure, but ever since that conversation with her doctor, seeing a yellow Volkswagen has become her personal talisman, instantly connecting her to hope.
Another factor in managing the disease discussed in the book is that "the perceived controllability of stressors has the greatest influence on immune response," i.e., the more control you feel you have, the better you manage. For Mea, daily meditation is an essential part of this process. She says "[It] allows me to listen more closely to my body," the first step on the road to working with the disease.
You Need to Be Alright with Your Life Changing
Being diagnosed with a chronic illness means that your life will change. Your ability to cope is directly related to how well you adjust to the shifts and unpredictability of the disease. There are the changes that involve the abilities of others to be flexible. Mea explains that the condition may end friendships from "being in relationships with people who are more or less able to do the shift, so the ones who aren't, just seem to fall away."
Mea says "your illness is your family's illness." The dynamics between spouses will change and how you parent your children will change. This can be hard for kids to understand. At the time of Mea's severe flare, she was unable to parent her two young sons and in the book, she mentions how they "experienced the loss in their lives as a kind of death." She recommends keeping the lines of communications open, saying that in this way, "the changing dynamic can strengthen your bonds"
As well, there are the daily changes, such as waking up and realizing you're having a bad day. Mea emphasizes how important it is to be able to turn that feeling on its head. She describes it as the ability to "throw a switch and say 'Ah, today is a laid-back day. Today's the day when I can do sitting things and simple things.'" Although she still gets stuck at times, experience has taught Mea the shortcuts to coping. You don't have to search high and wide for this ability, Mea says, just open up, listen to your body and you will find that "there is hope within us already ... we have all we need to sustain us."
You can read more of Lene's writing on The Seated View.