The Emotional Roller Coaster of an MS Diagnosis, Pt 2
Last updated: February 2022
In Part 1, I shared how the news of some recent friends' diagnoses (or suspected diagnoses) of MS have, in some ways, triggered memories of my own emotional roller coaster when I was diagnosed 5 years ago.
The more I thought about those intense experiences (which my friends continue to encounter and which I revisit in quiet moments), I realize there might be more emotional reactions to a chronic illness diagnosis like MS than what were first outlined by Kessler Kübler-Ross.
I'm thinking there might be as many as nine others. Nine!
Take a look and let me know what you think, and if you can add to this list, please do so in the comments. I'm a big fan of shining a bright light on uncomfortable topics as a way to claim some ownership over them, both as individuals and as a community. The more sharing we do, the better!
When diagnosed with chronic illness: 9 other emotions tied to loss
Beyond the Stages of Grief already discussed, here are a few other emotional journeys I’ve noticed for myself or among others I know following an MS diagnosis. They may be distinct from the classic stages Kessler cited, or could be sub-stages separated by a mere degree or two from the main ones.
- “Finally, an answer, I’m not crazy after all!”
- “At least now I can build a plan of action and keep from getting worse. It sucks to not know!”
- “Well, at least it’s not going to kill me. So I have that going for me. It could be much worse!”
- “I know people with MS and they manage okay. In fact, you wouldn’t even know it by looking at them.”
- “How long will this remission last? Will I wake up blind, incontinent, unable to walk tomorrow? The not knowing makes me anxious.”
- “Does an increase in symptoms like tinnitus or bowel dysfunction or eye problems mean I am having a flare? How do I know? What do I do?”
- “Are these latest symptoms just aging? Is it caused by some other health problem besides MS?”
- “How long will it take to get over this relapse? Does this progression change my diagnosis? Will I graduate to a more severe form? If so, when?”
- “Why do I feel so limited by my illness while others I know with MS don’t seem so limited?”
- “People only care about your health condition if it’s cancer. Nobody knows anything about MS, nor do they even care.”
- “Stop complaining… My MS is obviously worse than your MS. You can (walk) (see) (work) and I can’t.” Or, “How unfair that there are only drugs for people with RRMS? My primary (or secondary) progressive MS deserves better than that!”
- “Why do some people have easy symptoms while I get all the hard ones?”
- “Why all the long waits to just get in to see my neurologist? Why all these tests?”
- “Why do I have to now deal with the side effects of medication as well? They’re worse than the symptoms!”
- “When will I know if this medication is actually working?”
- “How come they don’t have a cure by now?”
- “I feel like crap but my doctor says I’m in remission. I give up! Diets don’t seem to make a difference. PT isn’t helping. I thought I was supposed to feel better if I treated my MS.”
- “People only really get behind you when you have cancer or terminal diagnosis.”
- “Others are doing so much better than I am. Why can’t I feel better? Is it my fault?”
- “I used to have dreams and ambitions. Now I can no longer do the things I wanted to do with my life. Now what do I do?”
- “All I do is think about my MS: when my next injection is coming, how to prepare for stomach problems or fatigue while traveling, making plan Bs for simple things like getting groceries. I just want a day off from thinking about it!”
- “There is so much more to deal with that I need an assistant to manage my medications, help me navigate the healthcare labyrinth, make sure insurance is taking care of me. There are so many phone calls, appointments, and paperwork.”
- “I hate having to think so much about myself when I have friends, family members, and coworkers I need to think about. And not all of them understand what I’m going through. My MS is adding stress to their lives, too.”
- “I am so anxious and worried that I can’t sleep, I can’t concentrate, and I have mood swings all the time. Then there are new and unpredictable problems. The emotional ups and downs are wearing me out.”
Loss of identity
- “Do I have any choices anymore? I feel like my body has betrayed me and I’m no longer independent, and it makes me lose sight of who I actually am as a whole human being.”
- “Who actually supports me now? My family members don’t believe me, some of my best friends have fallen through the cracks… where do I belong in the world?”
- “Can I still have a career? Will I still be able to perform my job without asking for help? Will bosses and coworkers judge me as weak if I need accommodations?”
- “Can I still find love as a person with MS? Will I ever get to enjoy romance, friendship, sex, or care for my (or even hope to start a) family now that I’m sick?”
- “My doctors do not care about me, they just throw drugs at me and expect me to feel better.”
- “I have no hope for a cure because it’s not cancer or the latest ‘disease of the month.’ ”
- “Things aren’t getting better… why do I even bother to try to fight this disease?”
- “So much for living mindfully. I may as well live on the edge because nothing I do for myself makes a difference.”
- “I don’t talk to friends or family or coworkers anymore because it’s too difficult to explain what’s going on.”
- “I don’t talk to friends or family or coworkers anymore because they don’t believe me anyway, or they pity me, and I hate being patronized.”
- “I don’t work (or take part in certain activities) anymore because I can’t perform them the way I used to, and it’s embarrassing. I used to be so good at these things.”
- “I don’t want to leave the house anymore because it’s physically too hard, there are too many obstacles out in the world for people with disabilities, and people can be cruel, besides.”
I am grateful to my friends who, through their own journeys, have shared their feelings in a way that helps me better clarify and value my own journey. Perspective can be a wonderful gift.
I hope that, by sharing these intense ups and downs that represent the emotional roller coaster of MS, I can help you to realize you’re not alone, you’re not crazy, and it’s completely normal to have these issues well up again, from time to time.
The old saying still rings true, “When you have lemons, make lemonade.” For people with MS, that could lead to a profitable lemonade stand!
Grieving the loss of one’s health (no matter mild or severe) is a process that requires time to overcome. Whatever else you do, don’t give up. Take each day one at a time and find new ways to be who you are, no matter how rough the path.
So, you tell me? Have I missed any stages? Please share below, if you're comfortable doing so. Thanks!
Have any of the following helped to reduce your pain? Select all that apply.