Facing a Future with an Autoimmune DiseasePosted On: January 5, 2017 | By: Chase Spurlock, PhD
When we were launching IQuity, I made an intentional effort to talk with people who had been diagnosed with an autoimmune disease. I wanted to know what I couldn’t find out in the lab – like how it feels to learn you have a life-altering, incurable disease. After all, how you feel about something determines what you do about it. IQuity makes it possible to know quite quickly, and with a high degree of confidence, whether that tingling in your leg is simply because you sat with your legs crossed too long or is an early symptom of multiple sclerosis (MS).
When we were launching IQuity, I made an intentional effort to talk with people who had been diagnosed with an autoimmune disease. I wanted to know what I couldn’t find out in the lab – like how it feels to learn you have a life-altering, incurable disease.
After all, how you feel about something determines what you do about it. IQuity makes it possible to know quite quickly, and with a high degree of confidence, whether that tingling in your leg is simply because you sat with your legs crossed too long or is an early symptom of multiple sclerosis (MS). What would be the emotional impact of this knowledge, I wondered, if it were bad news? Would it motivate people to take action, or would it knock the wind out of them?
Ultimately, I learned that a quick and accurate diagnosis is empowering. It overcomes the helplessness that uncertainty breeds, providing clarity about treatment options and the confidence to choose a course of action and follow it.
But the journey to this clarity and confidence is not the same for everyone. Consider the cases of two MS patients:
Patient One: Relief
In this case, the patient had been experiencing MS symptoms for years. He knew something was wrong, but didn’t think it was serious. That numbness in his arm? “Maybe I slept on it wrong,” he thought, “or I pushed myself too hard when I worked out yesterday.” He was an avid runner and one day he struggled on a course he had easily run many times before, finally hailing a cab to take him home. “I need to do a better job of pacing myself. I’m not 18 years old anymore,” he told himself.
He finally sought help when he lost the ability to write during a business meeting. However, the neurologist could not make a definite diagnosis. Though white matter changes showed up on an MRI, the doctor did not consider MS as a possible diagnosis at this point, so he recommended monitoring the patient for six months. However, during this period the patient began feeling terribly ill and decided to seek a second opinion.
The second physician ordered an MRI with gadolinium, a contrast medium that improves the quality of MRI images, and this clearly showed lesions on the brain and spinal cord, hallmarks of MS. Finally getting a definite diagnosis was a relief for this patient. Though it was certainly not good news, at least he knew what he was up against and developed an actionable game plan with his doctor that combines medicine, diet, exercise and monitoring.
Patient Two: Shock
The other patient felt anything but relief after she ended up in an emergency room with certain signs and symptoms – such as diplopia, or double vision – that led the doctor to suspect an autoimmune disease, which was later confirmed with an MRI.
The diagnosis hit this patient like a ton of bricks. She was totally unprepared – and scared. “Am I going to die?” she thinks. “What about my husband and children? What will they do? Who will take care of them when I’m gone? How could this be possible? Why me? What could I have done differently? Are they sure I have MS? Maybe it’s something else, something not so bad. Maybe they made a mistake?”
She went through every stage of grief in about an hour. It was traumatic, but in the end, she came to face the diagnosis head-on and began a therapy program to manage the disease – but the journey to accepting the reality of her situation was much more painful for this patient than for the one who had been seeking answers for years.
Living With A Diagnosis
Relief or shock – search the internet for “emotional reactions to an MS diagnosis” and you’ll find that they usually fall into one of these two categories. Yet, when they receive a clear diagnosis, just about everyone with MS or another autoimmune disease faces facts and embarks on a treatment program. The difference is in how they get there. To avoid the shock of a surprise diagnosis, always be completely open and honest with your doctor and be willing to take charge of your health.
1. Tell your doctor everything: Don’t hold back, no matter how silly you think it is. The pains and problems you think are not worth mentioning could be early warning signs – and the earlier you begin treatment of an autoimmune disease, the more likely you are to significantly mitigate long-term damage. (One of IQuity’s key benefits is quickly providing physicians with actionable information upon which to base a diagnosis.)
2. Take charge of your health: Educate yourself about symptoms and treatment options so you can ask intelligent questions of your doctor. Don’t leave the doctor’s office with lingering unanswered questions. Write it all down in advance so you don’t forget to ask about everything you want to know.
Finally, if you are diagnosed with an autoimmune disease, remember that you are not alone. Patient support groups play a vital role in helping people live fulfilling lives with chronic diseases. Reach out to them. The National Multiple Sclerosis Society is a particularly good resource. Most people think “disease organizations” like this only raise money for research, but they are so much more, including a source of professional counseling, resources for caregivers and peer-facilitated support groups.