I occasionally deal with those that see me in my wheelchair for the first time and talk to me like I am five. “Hi, and how are you doing today?” people ask. I answer like they are two. “Wow look at the grown-up clothes that you are wearing today” I comment. That usually goes over like a lead balloon at first. After a few minutes, some people smile sheepishly and apologize in embarrassment. I believe that when non-wheeled individuals see someone in a wheelchair, they make many incorrect assumptions.
The following is difficult for me to talk about because my MS issues are more evident than other MSers. Many with multiple sclerosis have symptoms that are not visible. These hidden symptoms cause many who are not sick to distrust MSers. The ill sometimes will say that they are too weak to do something. At that point, the word liar gets tossed around like a ball in a dodgeball competition.
Wheeled individuals do not deal with the same disbelief and distrust from the unseen MS symptoms. The majority of my MS issues are conspicuously on display for all to see. I do remember my early years of dealing with the doubt that comes from some non-MSers. That being said, those of us in wheelchairs have our battles with to contend.
MS has many symptoms that are common yet invisible. Many multiple sclerosis patients battle with a lack of trust, because some individuals who are not sick have more assumptions than facts. The fact is that a MSer can be negatively impacted quite rapidly by unseen symptoms stirs doubt in non-MSers. Many times people with multiple sclerosis have abilities that vanish without announcement.
Take fatigue, for example. This symptom has no outwardly visible signals. Fatigue is a feeling and not an apparent issue. It is not merely tired from staying up too late or working too hard. This deceptive creature can cause a mental or physical lack of energy. Fatigue is a prevalent symptom that is experienced by nearly 100% of multiple sclerosis patients.
Poor sleep is another deceptive symptom of MS. This restlessness can either be the cause or the effect of issues like fatigue and depression. Sleep concerns in its many forms are common in those with multiple sclerosis. Poor slumber can negatively impact the quality of life by affecting most parts of one’s existence. This severely debilitating problem affects both physical and mental abilities. I never understood how lousy sleep could impact my quality of life until MS.
Depression is a term commonly applied to a wide variety of emotional states. These can range from feeling down for a few hours on a given day to severe clinical depression that may last for many years. In its various forms, depression is one of the most common symptoms of multiple sclerosis. From the NMSS website: “in fact, studies have suggested that clinical depression—the most severe form—is more frequent among people with MS than it is in the general population or many other chronic illnesses.”
Depression is also an imperceptible symptom to others. This unrelenting sadness can have catastrophic repercussions on one’s existence. Doctors have said that depression has the most significant adverse effect on quality of life (QOL) in MS patients. It has more of an impact on QOL than disability status, fatigue, or reduced sleep quality. Neurological damage associated with MS can cause this deep sorrow. The list of causes for multiple sclerosis depression is exceptionally lengthy.
These are just three of the most common unseen multiple sclerosis symptoms. Hidden symptoms have caused doubt of many individuals living with multiple sclerosis. Some of the non-sick believe that they must see it like a rash for it to exist.
I have spoken to individuals who have had family members not believe the struggles of the MSer. This distrust is after the strength of said MSers disappears entirely over a short period. I have experienced my energy drastically weaken in only a few minutes. However, I often wonder how a family member can call any loved one a liar.
The bottom line is this: just because you cannot see a symptom does not mean it is not there. Also, do not assume anything about an illness as you will likely be embarrassed in your ignorance. Do not be ashamed but respect what you do not know or do not understand.
“It’s better to keep your mouth closed and appear stupid than open it and remove all doubt.” Mark Twain