"How did this happen?"
"It can't be! Why? Why? WHY???"
I know 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 I was first diagnosed with MS, and for many months afterwards, I felt like MS was a big dark cloud hanging over me. I couldn't plan my future, since the cloud obscured everything. Before MS, I had had plan: I wanted to continue my work as a physician. I wanted to raise my daughters. I wanted to travel. MS was DEFINITELY not part of the plan.
But gradually I realized that I needed to suck it up, stop the pity party, and figure out how to live with this thing. Here are some of the steps I took and recommend to others:
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. See my earlier blog posts about support circles. Reach out to others who share your diagnosis and learn from them, and tell friends and family how to be there for you.
4) Figure out what you need to lead your best life. You might need more sleep or shorter work hours. I know I 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.
I 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 I commented that growing up with diabetes must have been difficult, he surprised me.
"Actually, it's helped me take better care of myself," he said.
I've thought of his words many times over the years, and I have tried to apply his wisdom to my own life. I've tried to use MS as an opportunity to get stronger, eat better, exercise daily (modifying my routine as needed to accommodate my limitations).
I have an attitude-relapse sometimes. I have those moments when the fury and resentment return. But I can't live in that space. I tell myself to get over it! Then I regroup and remind myself to let chronic disease be a launch pad for better self-care, for setting priorities and looking ahead – not with fear but with hope.