“How did this happen?”
“It can’t be! Why? Why? WHY???”
Lisa Doggett, MD, knows from personal experience (unfortunately) that getting diagnosed with a life-altering or chronic disease is often a miserable, depressing, terrifying experience. It’s natural and OK to be angry, to be furious, at fate, at whatever randomness in the universe led to the diagnosis. Cry and scream and sulk and refuse to get out of bed. Go through the “Five Stages of Grief”.
And then, finally, after days or weeks or months (don’t let it go on longer than a few months), you have to GET OVER IT! You have to get out of bed and start moving forward. Yes, the disease has left you with a heavier burden. You probably have to take medicine and go to the doctor more often. You have symptoms and side effects. You have all sorts of limitations you don’t want, didn’t expect, and don’t deserve.
When Lisa was first diagnosed with MS, and for many months afterwards, she felt like MS was a big dark cloud hanging over her. She couldn’t plan her future, since the cloud obscured everything. Before MS, she had always had a plan: She wanted to continue her work as a physician. She wanted to raise her daughters. She wanted to travel. MS was DEFINITELY not part of her plan.
But gradually, she realized that she needed to suck it up, stop the pity party, and figure out how to live with this thing. Here are some of the steps she took and recommends to others who are facing something similar:
1) Find a really good doctor and care team. Find someone with experience caring for people with your diagnosis. You want a doctor who will listen, respect your opinion, and who is supported by a caring staff. Ask for recommendations from friends and family. Read on-line reviews. Try out more than one doctor if you can’t find a good fit the first time.
2) Focus on your abilities, not your limitations. Everyone has limitations, even Olympic athletes and Iron-man triathletes. Be resourceful and flexible. If you can’t walk, swim or bike or find a creative physical therapist. Find and honor your strengths, and maybe you will even uncover new skills.
3) Define and grow your support circle. Reach out to others who share your diagnosis and learn from them. Be sure to tell friends and family how they can be there for you.
4) Figure out what you need to lead your best life. You might need more sleep or shorter work hours. Doggett knows that SHE MUST exercise every day. Some people with MS even move outside of Texas to be in cooler climates that don’t trigger their MS symptoms so much. Defining your needs may require some exploration; get to know yourself better, and make self-care a top priority.
Lisa shared that she once had a patient with type 1 diabetes – the kind that usually develops in childhood, requires life-long insulin, and can cause a long list of unpleasant complications including blindness and kidney failure. When she commented that growing up with diabetes must have been difficult, the patient surprised her.
“Actually, it’s helped me take better care of myself,” he said.
Lisa has thought of his words many times over the years, and has tried to apply his wisdom to her own life. She has tried to use MS as an opportunity to get stronger, eat better, and exercise daily (modifying her routine as needed to accommodate her limitations).
Doggett admits that she has an attitude-relapse on occasion. She has those moments when the fury and resentment return but knows she can’t live in that space, and neither can you. She tells herself to get over it! Then regroups and reminds herself to let chronic disease be a launch pad for better self-care, for setting priorities and looking ahead – not with fear but with hope.
For more on Dr. Lisa Doggett’s journey from doctor to patient, check out Up The Down Escalator: Medicine, Motherhood, and Multiple Sclerosis. It is a story of triumph in the face of a terrifying diagnosis. A memoir of before and after, as she recounts her startling shift from doctor to patient as she opens herself up to the unexpected gifts of an imperfect life. It’s available online and in bookstores everywhere.