“Humans aren’t as good as we should be in our capacity to empathize with feelings and thoughts of others.” ~ Neil deGrasse Tyson
Someone anonymously sent me a social media message the other day.
He said, “I read an article about your life with multiple sclerosis. And I really liked the piece. You are a strong person. But all your whining distracted from the uplifting aspect of your story. Everyone in the world has struggles and your situation can’t be that bad.”
I wrote back.
Dear Anonymous,
My circumstances can be that bad. Not all the time. But when it is bad, it can be crippling bad.
I know you wish I would just shut up. You hope I would just stop talking. You want me to disappear and endure in silence. But when I speak. When I tell my story. I feel better. And those who can relate feel better.
I understand it can be very uncomfortable to hear the truth pertaining to living with a chronic debilitating disease. No one wants to hear about the struggle.
That is why I don’t tell many people how I feel. I’m just so afraid the truth will turn people off or appear as constant complaining.
And when I do say something, I find myself apologizing for making everyone uncomfortable.
So, I try to stick to happy subjects. People are more receptive to the triumphs. Someone is always telling me about the latest famous name who has been diagnosed with multiple sclerosis. Pointing out how that person conquered every MS obstacle. Every magazine showing how great that person is doing. Despite MS.
I really don’t know how much a disease like multiple sclerosis affects your life. So, I guess I shouldn’t be upset when you don’t identify with most of what I am going through.
I just wish you would think about how extremely hard it is for some people to perform simple task. Spewing your baseless judgments about the daily obstacles I face does not help. Your statement sounds like a dismissal of all my pain filled encounters.
You have the right to believe my experiences or not. Just please don’t tell me, “It can’t be that bad.”
Because you don’t know how bad MS can get for me.
Have a nice day,
Nicole Lemelle & Everyone Living With Multiple Sclerosis
Keep moving forward, Nicole. you are such a brave girl who has become an inspiration for many other people. I know life with MS is hard but nothing is impossible. Just know that there are always people all around the world who root for you any time, any place.
Nicole, Anonymous lives with so much health privilege that there will come a day when they, too, will have to live inside a broken body. Only then can we hope they will understand and have compassion. Good health is not a given for anyone! I have a relative who said something similarly to me several years ago when I was first diagnosed, and now they are miserable with Grave’s disease. I have reached out to them in a kind of autoimmune “solidarity” and they still look askance at me like I’m broken merchandise. Some people will just never “get” it. Much love to you and Happy Thanksgiving, Nicole! ~Tamara
Dear Nicole thanks for your reply to anonymous. I think you are very courageous and have helped me a lot over the years = thank you and have a happy Thanksgiving.
Love the ending… Have a nice day! Thank you for including me & the entire MS community in your response to Anonymous.
As I have always said and lived by as well as taught my children NEVER JUDGE A PERSON TIL YOU HAVE WALKED A MILE IN THEIR SHOES!!!!!
Hi Nicole! You’re friend Deb here from the “Big O” from long ago. I always enjoy reading your posts regardless of whether you’re “complaining” or not. You’re keeping it real and many people are comforted by your truthfulness. To “anonymous”: If you don’t get a good vibe by what you’re reading just stop reading. Your criticisms of Nicole‘s expression only add negativity to the readers. We’re here to listen to her story. Sending you love and light, Nicole. Xoxo.
My pain is MY pain, not yours. How amazingly ignorant you are for dismissing my feelings. And please note that I am not complaining or looking for sympathy. I am merely looking for understanding. In my particular case my MS causes me short-term memory problems, walking difficulties, arm weakness, sleepiness at the most inopportune times, difficulty sleeping due to restless leg syndrome (RLS), and the list goes on. I have a large host of doctors and therapists who aim to make my life a bit easier (and my wife’s!). I am 70 yrs old and have been dealing with this *^%$@ disease since first diagnosed at age 29. MS is a total ‘pain in the arse’ but you might notice that not many MS-ers complain too loudly. Most of us just put our heads down and plow forward. Complaining is a total waste of energy — energy that we need to conserve for our families!
Nicole,
I always look forward to reading your authentic and transparent posts!! You are a truthful light in the dark! What is never mentioned in any articles is that sometimes other people with MS can be cruel and also try to sell you the latest medical fad that will miraculously cure you in ten days.
I love your posts so please keep them flowing on the page. Happy Thanksgiving!
God Bless You ❤️
Seriously? Why bother to comment at all? And why say you’re strong and then dismiss you. Those of us who read your blog do so because we love you and we want to hear about your journey, honestly. If you are someone who can’t handle honesty, then read something else. Plus, it would seem to me that one of the goals of your blog is to share awareness. Awareness doesn’t work if someone doesn’t understand what to be aware of! MS is real, the struggle is real and if you don’t want to know about the struggle, then don’t read My New Normals. I’m sorry my friend. I bet this reader is someone known for their regular backhanded comments.
NICOLE, PLEASE KEEP TELLING YOUR STORY. When you express you are helping others as well as yourself. For the life of me I just don’t understand how someone could dare tell another what condition bad or not for them. If that person does not have MS then he will not understand what we go through. If he does have it then he should understand that MS is like a fingerprint. We all experience differently. I say if he is tired of reading certain contents, then don’t; unless you are willing to have an open-mind and learn something.
I want you to know “YOU ARE NOT ALONE”. Take good care!
Wonderfully said, Nicole!!! I continue to admire your strength and attitude. You are an incredible person.
Happy Thanksgiving!
Michelle
Anonymous, you and your whining are out of line.
Love your response. You are real and honest. Please never change.
Wow. And I think that it was anonymous says it all. I feel your frustration. Understatement. It is hardly frustration. We remind others of How they could be like us. I love your blog.
Nicole, may God continue to give you the strength to use your voice, platform and gift of writing to educate, inform and inspire others! Happy Thanksgiving!
People can be so uncaring and mean. Please continue to be you and share your experiences any way you feel fit. I personally do not need to have a happy story all of the time. I appreciate and love your honesty about your life. Keep it up.
Sorry you had to see that ignorant reply. Hopefully your eloquent response might make them see things a little differently!