MS is such a pain in the ass this way. There’s information. But I’m not entirely convinced that most of that comes from people who know what the hell they’re talking about.
Think about it this way. When you read “my recent diagnosis of MS” some of you know pieces of what it is, whether it’s a list of symptoms or a memory of someone you knew who had it. I know that the first time it had been brought up to me, this was the extent of my knowledge of what MS was. And there are those who have up close and personal experience with MS. They either have it or they know someone who has it. And this group feels strongly about how one should approach having MS. Now, make MS a disease that is diagnosed by eliminating all other diseases, disorders and medical conditions that share symptoms of MS. And there are as many different experiences between patients who have the disease as there are patients with the disease. Though statistically speaking, it isn’t at all a certainty that I’ll need a wheelchair or that I’ll become disabled before I need to retire. However, if I lose my mind someday, chances are it’s because I forgot where I put it.
I stayed off of web forums during the diagnosis process. Nothing is more misleading than vehemently declared anecdotal evidence that EVERYONE needs to follow. And if anyone tells you that getting spinal tap is paramount to torture should try being the mom at Warped Tour. But as I’m dealing with the changes and challenges of actually living with it, I’m scouring the internet for stories of people who have had similar concerns. It was my hope that others could shed some light on what they’ve done to either make it better for themselves, or to cope with the reality that there are some aspects of this that are un-fixable. There are many things about health and wellness, pain management, fighting fatigue, fighting the bankruptcy inducing healthcare system in this country…
(Yeah, I went there. You don’t want to know what I just deleted.)
Aaand…back to the point. The advice out there... Some of it speaks to me. Some of it is total garbage. There’s a plethora of information that floats somewhere between yea and nay. What I could learn about my situation has been helpful, if for no other reason than to know I’m not alone. But there are things people don’t seem to talk about and even then literature you get upon diagnosis danced around but ultimately failed to answer some of my questions. It doesn’t take a degree in medicine to tell me that having an incurable disease with an unpredictable prognosis will mess with a person’s self-image and emotional well-being. But of all of the contributing factors discussed repeatedly, there wasn’t a single reference to the possibility that having MS would change my face.
I’m not fishing for compliments or sympathy. I'm just being honest. I’m not saying this to get people to tell me how bad it isn’t and how much worse I could have it or that they don’t even see it. I know all of these things. I know it’s superficial. But it sure as shit isn’t nothing. It’s my face. Today I freaked out. Tomorrow I'll work on how I'll deal with it.