Balancing Happy Relief and Admitted Losses
I read comments on a closed page of Facebook ~ only members of the page can read it, so comments remain unseen by non-members. Reading them, one after another and all posted within a time span of two hours, from patients newly diagnosed and from those who have dealt with MS for years … well, they do have a common theme. Many with MS believe that, because some symptoms are invisible or misunderstood, friends and family have difficulty believing the reality of the symptoms.
I also answered the post, in a rather long-winded way:
Reading all of comments saddens me … Yes, there are friends I’ve lost but that may have been due to my retiring early … they are all still working, and most of my friends were workplace friends. My time is more my own, but theirs is not, and I understand that.
What saddens me is the pervasive sense among us that we believe some in our lives have an impression that we are ‘just making this up.” Not that many diseases or conditions today are still considered uncurable … so it’s hard for us and others to believe that this can’t be cured, eventually. We walk miles upon miles and raise tens and hundreds of thousands of dollars for MS research, and they come up with ‘new treatments’ and ‘new theories about causes’ when in fact we and others may believe that a cure will never be identified because it will put hundreds of medical people out of a job.
In my depression I believed that people thought me a fraud … in fact, it was myself doing that thinking. Most people have many other concerns in their lives, and my existence and diagnosis is just one among the many they have to think about. I’ve adjusted my thinking in the past year or so, recognizing that I’m projecting my thoughts about MS on my family and old friends. Because I feel like a fraud (my symptoms are most often all invisible: pain, cognitive and emotional) I think others must think me a fraud. That is ‘my bad,’ as the kids in my classes would have said.
Because I don’t want to seek pity or empathy I continue to put up a good front, and as my therapist pointed out, why then would I expect others to show empathy? MS is nothing I ever knew anything about until going through the diagnostic tests, and even now I only know as much as any of us know, which is still based on a lack of foundation, or cause. It is not enough knowledge for me, and I continue to look for more. But that is my focus. It does not have to be everyone’s focus.
I live each day as a new day (and the joke of meeting new friends every day is actually true for me!) I have found a new me, not a ‘new normal,’ but a new me, with new limitations in my cognitive abilities and social capacity. I live by the golden rule, and keep believing that if I am empathetic and compassionate to the world, the world will be that for me. I wish all MSers some semblance of peace and acceptance that life may never be the same, but it is still a life, and there are those few who do truly love us, and that is always enough.
It’s not my wish to offend or trouble anyone by writing this post – it is not a post I would put on my open Facebook page … as I said in my former post, I don’t want to impose my thoughts on others … but I do want to share my honest journey with those who are interested, in both the journey and my observations along the way. There may be those who are struggling with their own path and might, as one poster said at the closed page, find these words reassuring.
And the good news is … I saw the endocrinologist today … and shared this good news openly on my Facebook page:
– all good news. All of my numbers are right where they ought to be, even vitamin D. Bone Density is BETTER than it was three years ago (though still in the high risk for fracture range) … the Reclast is working! Doctor K. is happy, I’m happy … I know that what I am doing for my health is the right thing for me.