Making Comparisons with MS – Community Feedback

There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:

“Healthy” People Just Don’t Understand

  • This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
  • The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. ‪Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
  • When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
  • I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
  • When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
  • You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.

It’s really not possible to compare

  • You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
  • I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
  • It’s next to impossible to explain what having multiple sclerosis is like to people.

“Healthy” People offer a lot of unsolicited advice

  • They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
  • I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.

“Healthy” People are just trying to relate to us – it’s harmless

  • I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
  • I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.

What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!

Share

Matt’s Introduction

By Matt Cavallo

Hello and thank you for checking out the MSAA blog. My name is Matt Cavallo and I will be contributing a bi-monthly blog to the MSAA. Since being diagnosed with Multiple Sclerosis in May of 2005, I have dedicated my life, work and education to helping others live well with this devastating disease. My goal of this blog is to draw upon my personal experience to discuss relevant topics and resources for persons living with MS, as well as, for their caregivers.

My journey with MS started in 2005. At the age of 28 years old, I had an acute onset of Transverse Myelitis (TM). The onset of TM claimed my functionality from the waist down. I was unable to walk or go to the bathroom on my own. Six months later, I lost vision in my right eye due to Optic Neuritis. Following the bout of Optic Neuritis, I had a cognitive loss which dramatically affected my memory and word recollection. Finally, in 2010 I had a suffered a fractured C6 vertebrae, which resulted from damage left over from my TM onset. I had to undergo an emergency cervical fusion to prevent becoming a quadriplegic.

When I first started experiencing symptoms, I was depressed and afraid. I thought that at 28 years old my life was over. I would like to say I handled it better, but I didn’t. I pushed away my family, friends and even my wife, Jocelyn. I was sure that the hopes and dreams that Jocelyn and I had together were over because of my condition. I wasn’t sure that I would be able to have kids because of the TM and even if I could still have kids, I didn’t want them to have a sick dad that couldn’t participate in their life.

Today, I am happy, healthy and feeling great overall and am doing things that I never thought was possible when I was first diagnosed. Despite having MS for eight years and the complications that go along with it, I am living my dream. Following my diagnosis, I completed my Masters of Public Health Administration and now work as a consultant in hospitals across the US to help practitioners better service patients like myself. I also penned my personal memoir, The Dog Story, which has been tremendously well received globally by patients, as well as, caregivers who can relate to my story.  Today, I am the proud father of two boys, Mason (5) and Colby (3). The most important thing to me is that I am able to be a father and even coached Mason’s baseball team this past spring.Matt's blog

Today, I have partnered with the MSAA because I believe that we can make a difference in the lives of persons living with Multiple Sclerosis. I will be writing a series of blogs that focus on maintaining a great quality of life despite having MS. My blogs intertwine my personal experience with MS with resources, programs and links that I have found helpful. I intend this blog to be interactive. Please comment, ask questions or suggest topics that you would like to learn more about. We are on this journey together and together, we can make a difference. Thank you for taking the time and for supporting the MSAA.

Share