Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
The Battle for Healthcare
“You may have to fight a battle more than once to win it.”
– Margaret Thatcher
Once upon a time there was a girl who hurt all over. She went to her Doctor, whom she trusted, in search of help. The competent Doctor figured out what ailed her and they worked together to formulate a course of treatment that included medications for symptom management and holistic measures such as nutrition, exercise, and rest. The girl healed, then lived happily ever after.
Nice fairy tale, huh? Sadly, the story goes a little more like this-
Once upon a time, there was a girl who hurt all over. She went to her Doctor, in search of help. Her Doctor told her to take pain medication and it would get better. It did not. Next she went to the Doctor recommended by a good friend, the result was the same. No answers, another pain prescription, and no healing. She gave up, deciding pain must just be part of life.
Years went by, pain came and went, she lived, she suffered, she carried on with life. Occasionally she would seek out a recommended physician and try again for answers. Sometimes she even got a diagnosis. Sadly the diagnosis was always wrong, and so it went on for a decade.
One damp, dreary day, the girl awoke to find her hand would not open. Panic set in, and the push for answers began again, this time with ferocity. This time she would not give up. This time she would push and question her doctor until the truth was discovered. And she did. And a diagnosis was finally found.
Knowing what had been silently destroying her felt wonderful and terrible all at once. The girl knew this disease. She’d watched it hungrily consume before. She feared the future, but she was not a quitter, and so, she prepared to fight.
She did what any research-minded, science nerd would. She took to the internet and began reading all she could. She sought out a specialist to help her battle this beast. She tried all of the remedies, old and new. She found things that helped soothe symptoms, but did not put the beast back to sleep. She changed her lifestyle in ways large and small. Over time, she learned to listen to her body, to nourish herself, to rest, to set priorities and to love herself.
All the while, she followed the guidance of those who claim to specialize in her disease. She took their advice and their medications. She became frustrated again and again at the slow progress of her treatment plan. After all, this girl was on fire, watching herself being consumed, anything short of calling out all the firefighters seemed risky to her.
One day, she realized, when it comes to medicine, dispatch is out to lunch. Unless YOU shout fire very loudly, no one else is joining the fight. So she decided to start putting together a better brigade herself. She went back to her doctor and insisted on referrals for rehabers and renovators. Each new team member exclaimed they should have been called to the fire sooner. Each shared with her the extent of her damage and the things that could have prevented it. She became disappointed and angry at her specialists. At all the doctors who had let the fire consume instead of trying to minimize the damage. At a system in which, you have to become an expert on your disease and fight for treatment. At a system so focused on generating money it has forgotten about healing humans.
The moral of this sadly true story? Easy, as disappointed as I am to say it, medicine is broken. It is fragmented and frustrating. As we rely more and more on specialists, we get less and less whole person care. Rare is the doctor who suggests you see someone else in addition to what they are offering you. That would require admitting you need more than they can give. I don’t know if it is ego or ignorance that is causing this issue. I do know, until it changes, if you are not battling for healthcare, you are not getting the care you need.
Tenacious ME 