When living with MS, don’t let your hope turn toxic
Effort is required if we're to achieve our desired outcome
Like so many others, I have a bedtime routine. There’s bedside water to fill, sleep attire to change into, and bedtime stories to read. These days I’m not much more than a bystander, as nearly everything I do requires the help of another person. I suppose I should really say “by-sitter,” since a large part of the routine is transferring from my wheelchair into bed. Suffice to say, I haven’t gone to sleep in years without a reminder that I’m disabled.
Waking up is sometimes another matter entirely, especially if I was walking in a dream. I wake up ready to swing my legs over the side of the bed and start the day. I suppose that’s to be expected, as I’ve spent the majority of my life without multiple sclerosis (MS) and disability.
What isn’t expected is when I sometimes imagine, in my waking moments, that one day I’m going to wake up better. After 10 years of living with MS, you might think I’d be past those sort of desperate thoughts. I know I did. I guess we were both wrong.
Avoiding toxic hope
A little over a year ago I wrote about an acquaintance finding out I had MS. During the course of our conversation, he told me that he hoped I’d get better soon, and I thanked him but let him know that I wouldn’t. If I’m being honest, I might’ve added that I often hope to get better, too.
I’d like to tell you — I have told you — that my hope is purely practical, and for the most part it is. Generally it’s based in realism, but sometimes it still drifts into the realm of fantasy. I think we all agree that positivity can sometimes be toxic. For me, there seems to be such a thing as toxic hope, too, but this time the toxicity is coming from inside instead of outside.
Hope is defined, in part, as wanting something to happen or to be true. For me, hope becomes toxic when wanting becomes wishing. A Psychology Today article lists seven ways that hope can do bad. All are valid, but the one that sticks in my head is that hope can be a negative thing when it causes you to give up your power and control. Simply put, it’s toxic to wish for a certain outcome but not take any responsibility for making it happen.
When it comes to my multiple sclerosis, I don’t feel very powerful or in control, but I am. I’m doing everything I can and what I feel is best for me. There may not be a cure for MS, but I’m not sitting around wishing that one will be discovered. I’m taking the disease-modifying therapy that my doctor and I decided works best for me. I’m also taking steps to control various symptoms and improve my everyday life.
In another article concerning the downsides of hope, the author talks about the trouble with fantasizing about winning the lottery. People can hope to win the lottery, of course, but healthy hope means they still make an effort to solve their own problems. I think the odds of seeing a cure for multiple sclerosis are better than the odds of winning the lottery, so the efforts I put into my life with MS should be greater as well.
If you have a disease with no cure, it may seem like hope is all you have. Keep hoping; just keep your hope grounded in reality. If it is, I doubt that it can ever be toxic. If we stop hoping and start wishing, then we stop trying. I plan to keep trying.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Julia huiskens
Dear Benjamin,
Reading your piece, immediately the recognisable facts just hit me, big time. Everything you wrote is true. Don't have anything more to add, its so palpable, maybe that i don't have children. But you hit the nail right on the head. Thank you for sharing this, i almost wrote feeling, but fact of living with in this case ms, is more appropriate.
Ps, just back from a day in hospital, ('injection-lesson") And got the same comments from 2 colleagues hoping i would get better after today...
Kind greetings, Julia
brenda s scharping
This is a great article. I too, wake up thinking that I'll be able to get up and walk like I used to. It seems so likely when I'm lying in bed. In my dreams I'm always walking like I used to. Luckily, this does not extend into my waking moments. I started to ignore articles on new drugs and procedures exactly because of false hope. If I work on a day-to-day basis and do what I can, I find that my mood is calm and positive. Thinking about the future though leads me into the wishing stage.
Benjamin Hofmeister
Thanks for the comment Brenda! My dreams seem to come in three varieties. In some I'm walking like I did most of my life. And others I have MS and am wheelchair bound like I am now. And in the third Kind I'm walking around normally and then suddenly remember that I shouldn't be and have to struggle back to a wheelchair before the clock runs out and I fall over.
Benjamin Hofmeister
Thanks for reading and for the kind words Julia. I wish we weren't sharing this life with MS, but here we are. You seem to have my realistic outlook and realism makes the outlook suck just a little less.
איריס פרסקי
nice to read your thoughts and hopes, Ben Hofmeister.,
but why with all the research and experiments they cannot find a cure to this disease.
Benjamin Hofmeister
I'm not exactly sure why I sure hasn't been found but the more I research multiple sclerosis and different ways to control the symptoms, the more I realize how much I don't know. I am almost at the point of looking into going back to school just so I can understand half of what I read. Thank you so much for the comment and for reading!
Christopher Torri
I know exactly what you mean. I could have been doing much more these past seven years in a nursing facility, but instead I've been waiting for lightning to strike while getting sicker and feeling more lousy. I have a blog that I haven't posted anything on for three years now. That doesn't help anyone--especially me--if I just stay retreated in the shadows.
Benjamin Hofmeister
Thanks for the comment Chris! That's been my biggest regret too. For at least the first two years after diagnosis I put off doing what I was capable of until I "felt better". Now that's just time that I'll never get back. I try to pass the lesson of do what you can while you can on the people just diagnosed. If I could go back in time I would tell myself that exact thing, but I don't know that I would have listened.
Lisa Kandel
I said prayers for both of you! Keep the faith. We may not be healed in our lifetimes, but I believe we will be in eternity. Stay blessed my friends.
Benjamin Hofmeister
Thank you so very much Lisa. That means more than you'll ever know.
Sivan
Great article Benjamin. We hope and hope and hope that we will get better someday. Well doesn't that give us energy to carry along all day.
Anyways super happy to read articles like this and get inspired
All the best to you and all your readers
Regards
Benjamin Hofmeister
Thank you so much Sivan!
Arlene Mowry
Thank you Ben for another spot on article. I have had a mild case of relapsing remitting MS for over 30 years. It has never gotten too bad, but it has never improved either in the two areas that most affect me - heat tolerance and afternoon fatigue. Most people are unaware of my diagnosis and would never suspect I have MS. For some of us it is a hidden disease.
Benjamin Hofmeister
Thanks for reading Arlene! Before my disease course got to be too much to hide, I think I deliberately tried to keep it hidden. Not out of fear of losing a job Etc, but because I knew people didn't understand it and I really didn't want to explain it, because I wasn't really sure how. You could probably say that I still don't know how but I'm trying LOL
Kim Ahmed
Benjamin, hit another one out of the park. Reminded others to stay grounded in reality but also to do what you can with what you’ve got. I’ve had success with visualizations at different times in my life & I have one for MS, but if it doesn’t bring anything to fruition or have real results, so what?! It entertains me & helps me feel like I’m fighting back. Fighting for 21 years. Fight on, brother!
Benjamin Hofmeister
Thanks Kim! Thanks to you folks like you , intend to keep fighting on no matter what.
Leissa Schultz Kopinski
It’s so nice to feel that somebody understands my everyday, thoughts and feelings. I too can wake up, be half asleep and dangle my legs over my bed. I marvel I do this after 15 years full-time in a wheelchair. It takes me just a second before I remember, I’m gonna end up on my rear if my feet touch the floor.
When I was first diagnosed, I had high expectations of a cure and an over-abundance of hope. Now I have realistic expectations and I still hope for a cure. Your article has reminded me there’s a couple more Dr. ordered steps to take to better be in control of my health. This will accomplish what my Dr. and I have decided is best for me and treatment.
Take Care-Leissa
Benjamin Hofmeister
Thank you Leissa! If you have the secret to stay in completely grounded and realism please let me know. LOL I would like to say that I am super practical, but I still have bouts of completely unrealistic hope.
Sandra Lee Herl
Your article on Hope was comforting to read. I too, have Primary progressive MS. Our feelings and thoughts are on the same page. After 35 years, I still hope for a an easier life. Add old age to the mix, everyday is the same but a surprise. I never let the diagnosis run my life or dwell on it. I continued forward, always doing whatever I was capable of. Worry or attitude would have made it worse. I also lived in Guntersville y seen Neurologist Chris LaGanke in Cullman who was best in most of US.
Hope you also look forward to life regardless of MS.
Benjamin Hofmeister
Hi Sandra! Growing up I always thought Guntersville was a retirement town because so many of my family retired there. I still find myself on realtor websites looking at property up there.
You're probably the third person in the past 6 months that is mentioned Dr LaGanke in Cullman. If I wasn't getting such good care from an MS specialist at UAB that's where I'd be going for sure.
Lynn
Good article - thank you Benjamin. My hope with this insidious disease is no longer, unfortunately. I’m a realist…by nature. Diagnosed in 06/2000 with RRMS, my MS specialist, at that time told me and my former husband, not to worry because he believed there WILL be a cure within 5 years. Um…really?? Sounds promising and dangerously hopeful. Fast forward, now with many other specialists, I’ve advanced to SPMS, but more likely reaching towards being PPMS. I’ve given up on neurologists & specialists and convinced that they simply can’t figure out multiple sclerosis and/or which successful treatments may help. I’m choosing to live with it cautiously, meditating, stretching, eating healthy, an occasional glass of wine, and not into any dmt’s, for now. Somewhat thriving these last 24+ years mentally, emotionally, physically, spiritually with the help of good friends/family, a Golden Retriever, who has since passed on, and exercising as much or as little as possible to survive. Peace to you and yours, Ben…Stay strong, my fellow warrior -🧡Lynn
Benjamin Hofmeister
Thanks Lynn! Thanks for the encouragement! It isn't always easy to stay strong when you have this disease but I'm doing my best thanks to folks like you