The Emotional Roller Coaster of an MS Diagnosis: Part 1
I was formally diagnosed with MS on May 15, 2013 (almost 5 years ago!), in the middle of what I now recognize as a relapse, and it was not the first time I’d had some of these symptoms. Informally I had been diagnosed in late March, by way of a first MRI, but if you’ve been diagnosed with MS, you know there won’t be just one MRI (or blood test, for that matter).
My diagnosis was pretty straightforward
All this to say that my diagnosis was pretty straightforward: a spinal tap confirmed what was found in two sets of brain and spine MRIs, with and without contrast, to go along with my symptoms and a history that suggested this was not my first relapse rodeo.
More than four years later, I feel like I’ve been safely ensconced in my acceptance that I was going to be stuck with MS for the rest of my life, but that I would be okay. I was diagnosed at age 47, and have had some symptoms going as far back as age 10, so my MS seems to have a snail’s progressive pace. Odds are good that when I hit the harder-to-manage symptoms of MS (if I ever do), it will be when I’m old and gray .
There’s comfort in that for me and, considering I also have rheumatoid arthritis, I think the odds of me suffering more from creaky, painful joints are higher than what MS might have in store for me.
Understanding others' experiences
Since my diagnosis, I have encountered three friends in separate situations who were being tested for multiple sclerosis.
Let's just say, their experiences are different, and yet, the same. While I’m still more or less in acceptance mode with my own condition, their emotional responses to dealing with MS as a possible diagnosis have triggered memories of my own passage through the stages of grief that people experiencing upon being given such news.
Friend A brokered a meeting between myself and another healthcare professional to discuss the struggles they were having with certain kinds of symptoms (of the far more unpleasant variety, including problems walking and incontinence). She made an appointment with my neurologist, and I joined her for that meeting. It turned out she didn’t have MS. Further tests identified a much more disabling progressive neurological condition.
Friend B has been dealing with mystery illness for a long time. He has gone to so many specialists that you’d think they would have known right away that he had MS. He’d even gone to my neurologist like Friend A had, but was told tests were inconclusive. Years between MRIs had to pass before he was given a diagnosis that could clear the McDonald criteria. Meanwhile, Friend B had “progressed” to a wheelchair and was experiencing classic neurological dysesthesia, spasms, numbness and more.
Then there’s Friend C, who recently contacted me about the vagaries of everyone’s (least) favorite test, the spinal tap. She’d told me she was having facial pain and numbness and had already had an MRI, but was going in for lumbar puncture to rule out MS. Within a couple of weeks, MS was, in fact, ruled out. No O bands on the spinal fluid and the MRI didn’t show lesions. Oh, lucky day! But she still doesn't quite know what's going on with her body.
In every case, I am reminded of all the myriad ways in which I had to deal with the mystery of my own symptoms (for one thing, I suddenly couldn’t read… I could see, but I couldn’t comprehend). The emotional roller coaster that this disease puts us on involuntarily can be so stressful!
Emotional roller coaster
The fact is, we all go through these different stages of grief, not just once, but many times, but rarely in the same order and in no way that one can predict.
As author David Kessler writes in Grief.com:
“[T]hey are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief ‘s terrain, making us better equipped to cope with life and loss. At times, people in grief will often report more stages. Just remember your grief is as unique as you are.”—David Kessler, co-author of On Grief and Grieving with Elisabeth Kübler-Ross (On Death and Dying)
As I think about my own journey with MS, these stages come back to me as memories, but also, sometimes, they emerge as new and unexpected trips on the roller coaster even now.
Classic stages of grief
The following are the stages that Kessler and Kübler-Ross cite in their book. It’s fair to assume everybody will go through these at some point following news of a chronic illness diagnosis. In each case, I’ve added common statements to illustrate the stages. These statements are a amalgamation of my own experiences as well as those of my Friends A, B and C.
- “No symptoms now means I must have been misdiagnosed!”
- “After all these tests, if the doctors still disagree or can’t make it a conclusion, then obviously it’s not MS. Right?”
- “I only have these two symptoms. Maybe I don’t actually have the disease, just these two symptoms, and if I treat them, I’ll be cured.”
- “None of my doctors seems to think this is urgent, so I bet I’m actually not as sick as they say I am.”
- “Insurance companies (or doctors) (or pharmaceutical companies) (or technicians in charge of tests) are the devil! This costs way too much and is too much of a hassle! They want to keep me sick so they can just get richer off my misfortune!”
- “Why does this have to happen to me? Why now? Why this?”
- “You mean to tell me that my last diagnosis was a mistake? I paid for and endured expensive, harsh treatments for something I didn’t have? I wonder what damage they’ve done to my body! Who can I sue?”
- “Our healthcare system is a lost cause… nobody cares about my case because I have crappy insurance or my condition is too difficult, so they just give up! How am I supposed to live like this?”
- “If I take these supplements (or practice meditation) (or go on a special diet) (or do these special exercises), my condition will all go away... right?”
- “I am smarter than most people. The more I do my research and learn about it, the closer I will be to a cure.”
- “I promise to do whatever the doctor says because that will fix me.”
- “If I just stop working (or exercising) (or interacting with people), my stress levels will go away and I’ll be cured.”
- “Why bother to take care of myself now? I did my whole life and I still got MS! Meanwhile, Mr. So N. So smoked their whole life and was never sick a day in their life. How is that fair?”
- “I can’t live with these symptoms anymore. This has gone on too long. This pain, this discomfort, this weakness or disability is just too much to bear.”
- “Nobody believes me. My condition is invisible and everyone thinks I’m faking it. I am all alone in this. I know nobody who understands this.”
- “I used to be this different (better) (awesome) person and I now I am the victim of theft by this disease; it has taken away everything I am.”
- “Look around. Everybody is broken. This is just what my broken looks like.”
- “I was a whole person before I was diagnosed. I’m still the same person now, just with a few added complications.”
- “I may have serious limitations but I won’t let my disease shut me down. I’ll work at a job if I can, or volunteer, or continue to do things I enjoy whenever I can.”
- “I choose to keep going rather than curl up like a potato bug and stop living. Some days are better than others. That’s life.”
I suspect there are other stages (or substages) of grief and loss that we also encounter upon receiving a chronic illness diagnosis. In Part 2, I'll unpack 9 other emotions one might experience on this roller coaster…and you can tell me if you know of any others you've also felt.
Does your employer provide workplace accommodations due to your MS?