Keeping Up Appearances With MS

MS Living Stories

Do We Really Look Like We Have MS?

When people ask me what is the worst symptom that I have with Multiple Sclerosis it is difficult to come up with just one answer. It is hard for everyone who haven’t been around anyone with this disease for any length of time to really understand all the different things we experience. It is extremely hard for them to comprehend how bad we feel when we look “normal” on the outside. 

Unless we walk with a cane, walker, or in a wheelchair many of us don’t really exhibit outside appearance of having a disease; so this alone can be a deceiving for them. We all have been accustomed to looking at someone’s appearance to inform us of how they are doing. . With MS, the damage is inside our body with varying symptoms like fatigue, weakness, muscle spasms, pain, just to name a few which can’t be witnessed by others.

It is common that each day can be different from the day before. Many times I have described myself as having a good day or a bad day, hoping that some may understand, and find that some do if they also suffer from a chronic illness or disease. I suppose the major complaint for me having MS is more a quality of life issue. An example of this would be how many bad days do I experience than good days, or the fact that planning outings with family or friends, scheduling a vacation months in advance, or even taking a road trip are difficult for me. Getting through each day with all the variety of symptoms that are experienced, are a challenge. I miss jumping up at a moment’s notice and experiencing a long day with a lot of activity without worrying how this will affect me later. Even now I do not trust myself behind the wheel longer than a 15 minute drive. Needless to say I am house bound quite a bit.

Wanting to work a full time job again is a dream that I have given up on.  Even something simple by having to never say NO to family or friends with an invitation out due to feeling bad would be a major improvement. So saying that any one symptom is worse than another isn’t what comes to mind when asked. It would be what part of my old life I miss more because of having Multiple Sclerosis. Please understand that I’m not saying that we don’t have some really serious symptoms along with the duration of all of these are exhausting. There are days that some of those can be 100% disabling, but that just leads me back to my initial thought it affects my quality of life.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.