Many people have a distorted version of what MS looks like or should look like.
There are many versions of MS and the symptoms vary from person to person. As someone who has first-hand knowledge of MS, I’d like to offer some insights into this nasty little bugger that constantly leaves those with it in a constant fight or flight mode.
Multiple Sclerosis is an autoimmune dis-ease and it constantly attacks a person’s immune system in many different ways.
MS is a result of scarring on the sheaths protecting the nerves that run through the brain and spinal cord. When these nerves are disrupted, they can cause various symptoms, some may be visible to those around, but more often than not, they are invisible. Those who have MS know firsthand what those daily invisible symptoms are.
In my previous article, Multiple Sclerosis: Recognizing the Early Signs, I gave some insight into the early signs and symptoms of MS but what that article didn’t explain are the things that people don’t see.
Here Are 4 Things About MS That People Don’t See:
Pain and Chronic Fatigue:
Many people who have this debilitating disease often have pain and chronic fatigue. Many have issues with heat and humidity, even having dental work done can worsen the symptoms. Hot feet are common, and a person’s feet are so constantly hot that they prefer to be barefoot. A feeling of being hugged too tightly around the chest and torso is very common, it is also known as the MS hug. One of the worst symptoms for many of us is the numbness and tingling and prickling sensations that affect the arms and legs. This can make picking things up and holding them difficult along with making walking or getting up difficult.
The second worst issue that cannot be seen are cognitive issues. It comes with the forgetfulness and trouble with concentration, and it can be very scary to be in that state of unease. Balance is a big issue, it can actually make a person walk like they are drunk when in fact they aren’t. That, in itself, can be very embarrassing. And, my all-time favorite is the bladder issues, yes, I am being sarcastic. This is because the nerves affected with MS not only affects the bladder but the bowels as well. This can keep a person home for fear of leaking or straight up peeing their pants, and you never know when it will hit, so most of us wear pads daily or just don’t go anywhere.
Fatigue is probably the most misunderstood symptom. It can be very hard to explain to those who have no idea what kind of fatigue a person is dealing with. It can be very debilitating and can rob a person of their livelihood. Sometimes it can take every single ounce of willpower a person has to just get out of bed and complete routine task throughout the day.
Last but not least, MS can greatly affect a person’s self-esteem. When dealing with as many issues as we do, especially physically, a person can become very down on themselves. This is because it feels as if their beautiful body has turned against them and is fighting them at every turn. They no longer feel human or even sexy because either they hurt all the time, or they are constantly tired, forgetting things, dropping things, walking funny, or peeing themselves. This ALL takes a major toll on a person and can lead to depression. That, in itself, is invisible.
In my case, I have all of the above plus the lesions on my brain have caused the right and left frontal part of my brain to miss-fire. This causes what is known as ‘Absent Seizures.’ These are seizures in which you lose the concept of time, sometimes up to 20 seconds, and then you are completely unaware and have no idea what you were doing. This was very scary when they first began, I honestly thought I was losing my mind. I am now on anti-seizure medication. I am aware of when they happen now, which thankfully the medication has decreased the number of seizures I’ve had.
People may say, “but you look so good,” “you don’t look sick at all,” or even, “you know, my aunt’s friend’s uncle had MS and you couldn’t even tell.” Please do us all a favor and don’t say things like that, especially to a person who has an invisible illness such as MS. It is not helpful in the least, even though you may feel as if you are coming from a loving place, it really isn’t very loving. The best thing that you can tell a person is, “I am sorry you’re hurting and if there is anything you need, I AM HERE FOR YOU!” That means more than anything!
Please remember this too, if a person is living with MS so is their family because everyone in the household is affected.
It can take a really big toll on the family. Communication, love, and support are vital.
I leave you with this:
When we support and love each other through an illness or disease, it makes dealing with it a little more bearable.
Love and Light to All,