There is so much wrong with Lyme disease, the testing, the medical system, the insurance benefits, the symptoms, the treatment, the understanding, the financial burden and the list goes on. There is so much wrong that I feel overwhelmed with all that has to happen to find help for (likely) millions worldwide. And yet nothing, almost nothing is happening.
I have spent, days, weeks and months through my battle with this disease trying very hard to figure out where and how to concentrate my efforts to find help for those needlessly suffering as I have. A fight that would not be so hard if people understood this disease better, if doctors weren’t being charged after treating appropriately, if the regulatory bodies didn’t restrict the appropriate treatmentfor this illness, if researchers could get the science out showing most tests and treatments are inadequate, if insurance didn’t decline those suffering, if we didn’t have to travel to another country for treatment, if we didn’t have to remortgage or use our savings to find health, if people could truly understand what it feels like to suffer from Lyme. And that’s when I realized what had to happen to solve it all.
If I had one wish and could only be granted one wish for Lyme patients, it would be this. It would be that people could see, feel and understand the symptoms of Lyme. Because if they could then:
– My husband could have felt the pain in my joints and muscles, because he would have not let me convince myself, it was from a workout or lack of–
– My doctor would have felt how hard I had to work to breath to just walk up my stairs when a year before I had completed an ironman
– My coworkers would have not passed off my balance, memory and comprehension issues as me rushing, overworked and too busy
– The cardiologist would not have accepted my maximum 9 mins of stress testing as normal, seeing I could run, bike and swim for 7 hours without fatigue before.
– The health units would not claim that a tick had to be attached for more than 24 hours, when the Lyme, Babesia and Bartonella entered my body after 8 hours, because I unsuccessfully detached it cleanly.
– My friends who saw my shaking, twitches and weird illnesses could have known how frequent they were and not let me dismiss them
– I could have realized how slowly I had declined over 3 years and not made excuses for the 50 plus symptoms I had acquired
– The list of diagnostic symptoms for Lyme can be realized years before they are so extreme, you can no longer deny what is going on
– The insurance companies could wake up in my body and know what it is like to not be able to get out of bed easily and need to hold railings and the walls to be sure your body can support you
– Anyone I encountered could feel a dose of the extreme fatigue, that is unlike anything I have experienced in an ultramarathon, endurance race or the hardest workout, and to know the illness, nausea, dizziness and weakness that follow rest, only making it worse
– Every specialist could feel the appropriate symptoms that fall short of being detected by the diagnostic testing
– False positive, false negative and useless testing would be unnecessary
– Every employee could feel what it is like for their staff to work with so many things wrong and know they are giving all they have to remain committed and faithful
And if my one wish that others could see, feel and understand the symptoms of Lyme, is too much, then I could make it less. It would be that I (and other Lyme sufferers) could realize how bad symptoms are before its too late…the symptoms that develop so slowly over time, I was able to dismiss them, to believe the multitude of doctors and specialists who said I was fine and allow me to blame myself for everything that was going wrong. And in that, to know the longer you deny this disease the harder it is to battle it. Oh how hard the battle is.
So if I break my wish down into tiny actions, it becomes this:
– share my mistakes
– share what is wrong with the system
– share solutions
and most of allshare hope…
My hope that one day everyone will understand Lyme and not because they have experienced it. But because they know how it ruins lives, how valid it is and how important it is to believe, diagnose and treat immediately.
yes, sharing our hope with people around us helps, a whole lot