Invisible symptoms

Multiple Sclerosis is sometimes called an “invisible disease” because many symptoms go unnoticed by casual observers, and even by those living with someone with MS.

While I am in a wheelchair, a very visible symptom of my MS, I do experience symptoms not as visually apparent. For example, I often get vision problems and dizziness, as well as memory issues that affect my cognitive function. Somatic issues are also common, including weakness and fatigue, pain, and numbness.

Describing these subtle symptoms to those around you presents its own unique challenge. Just because others cannot see everything I’m going through that doesn’t mean I’m not experiencing life with difficulty.

Fatigue is one of the least understood and most frequent symptoms of MS. Fatigue is a very real symptom, resulting from damage to the nervous system. People often compare my fatigue to whatever they have experienced. But it’s not the same. Describing fatigue as feeling tired does not do it justice. Instead, perhaps comparing it to the feeling of wearing a lead suit might make it easier to understand. Everything is heavy and just moving is almost impossible.

MS fatigue can interfere with one’s daily functioning. It is best described by Spoon Theory – “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

Another invisible symptom of MS  I experience is pain – for years it was a common misconception that MS doesn’t cause pain. Pain is a very real symptom and can either be acute or chronic. Pain from MS can be a direct result of damage to the nerves or neurogenic. Or MS pain can be associated with living with disability and its effects – from using a cane or walking aide and the pressure you put on your arms to the pain caused by favoring one leg over the other, just living with MS can cause pain.

While I may look fine, remember that some of the symptoms which have the most impact on my life cannot be seen. Remember the invisible symptoms.

Support: Family

While MS has altered some of the things I’m able to do, and my relationships with others, I am lucky to have a strong, meaningful relationship with my family. But I have learned that there is the potential for MS to have a negative influence on family relationships. While my family has been supportive, I have learned from others that if family members aren’t willing to learn about MS and how it affects the person, or to listen to and respect each other, this can be a great source of tension.

MS is unpredictable. Individuals with MS and their family members may have difficulty anticipating what the next day or week will bring, let alone the distant future. Planning becomes difficult, creating an ongoing need for everyone to stay flexible. For example, instead of making plans to go to the movies, maybe have the family over and rent one.

My family lives in Wisconsin while I live in California. I have lived on the West coast for 15 years so we have gotten used to seeing each other only a few times a year. Since I was diagnosed, those visits have fallen dramatically. MS has disrupted my family's rhythm.  I am not comfortable flying since I no longer walk and airports, let alone airplanes, don’t really cater to the disabled. Unfortunately, that means family has to come to me, which they do. We have adapted and still have fun and good laughs. But adaptation is key. MS changes things for everyone.

Sometimes it has to be all about me.  I may not feel up to certain things. Truly, it’s not you, it’s me. If you ask how I’m doing and I say ‘fine’ or ‘okay’ think about this. My MS means I’m experiencing life with difficulty. A difficulty most can’t understand. I hope everyone gets the respect and care from family that I do. If not, know that strong connections with others are an important ingredient in a fulfilling life.