Tag: Chronic Illness
Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part D: Addressing Researchers find patients’ annual financial burden under … Read More MS News: March 2017
Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.
“To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them.”
Despite chronic pain and fatigue issues, I am making the best of my life, and I am doing everything possible to be the best version of myself as I can be. All I ask of you is some understanding of what I am going through, and know that every bad day is only making me stronger. Some days, though, I want you to hold my hand or hug me and tell me that everything will be OK.
Nevertheless, positivity, when faced with chronic illness, is not a cure. It never will be. That doesn’t mean I can’t slander myself, right? Hitting the nerve, as it were. If my central nervous system is allowed to hit me, I am as authorised to hit back. Three times over.
_____________________________________________________________________________________________ © Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.
Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.
If people would at least show some respect, many people with chronic or terminal illnesses would live easier lives. After all, knowledge is power.