Lisa Doggett

"How did this happen?"

"Why me?"

"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.  

Sometimes I imagine myself in a parallel universe, as someone with MS who lacked resources and insurance at the onset of symptoms. What would my life look like? Would I be able to walk, to work, to drive? Would I be drowning in debt, choosing between paying rent or paying for my medication? Would I even have a diagnosis or be dismissed by doctors and labeled with "anxiety," "depression," "nonspecific dizziness," "nonspecific numbness," "neurologic symptoms of unknown etiology," "hypochondriasis?"

In my years as a physician in community clinic settings, I saw hundreds of uninsured patients with challenging health conditions. Together we struggled to navigate the complex web of services available, but we often came up short.

When I developed symptoms of MS almost nine years ago, I had vague, nonspecific complaints. Dizziness was the most notable one, but I couldn't describe it well. I was fortunate to see a neurologist and then an ear, nose, throat doctor – both personal friends - within a week. I got an MRI and had my diagnosis in nine days.

But what if I hadn't been a doctor, well-connected and insured?

I have no way of knowing for sure, but I suspect my diagnosis would have been missed, possibly for a long, long time. Many people go months or years with symptoms of MS and no diagnosis. Without insurance and ready access to care, I imagine I would have ignored my symptoms for as long as possible.  Like many of my patients have done over the years, I would have waited until I was desperate, panicked, or incapacitated before seeking care.

When I did finally decide to see a doctor, I may have ended up in an emergency room, waiting hours to be seen, shuffled through an unfriendly system, and still left me without a diagnosis, but with a hefty ER bill.

I could have ended up disabled from MS, unable to pay the ER bill, unable to work. Eventually someone would have ordered an MRI – maybe during an expensive hospital admission for an MS complication – and the diagnosis would have revealed itself. But then, would I have been able to afford the medications needed? Would I have progressed from relapsing, remitting to secondary progressive MS (which is often more severe and much harder to treat)?

I feel certain that my brain MRI would have a lot more white spots and black holes – those tell-tale signs of damage from MS – if I had not received timely medical care.

I frequently share my story, especially my presenting symptoms and diagnosis, with other doctors and nurses, hoping that the possibility of MS will come to mind when they see a young or middle-aged patient with unexplained neurologic symptoms. I encourage EVERYONE, no matter how healthy, to get health insurance – and keep it, no matter what. I also urge those who are struggling with mysterious health problems to find a good doctor who is persistent and curious, who will hunt down answers and resources.

I give thanks for having the good fortune to receive high-quality care for my MS and to lead a healthy, productive, and fulfilling life. But more than anything, I long for the day when every single person receives the health care they need and deserve. 

I encourage others to share their stories below, especially challenges accessing the health care system or reaching a diagnosis of MS or another condition.