Spotlight: Living With An Invisible Illness
So many symptoms of MS whether emotional or physical are not visible on the outside. Let us know what it is like to live with an invisible illness. How do you describe what you're going through to friends and family?
Most MS sufferers with 'invisible symptoms' should understand how lucky they are to ONLY have invisible symptoms. If only my symptoms were invisible. Like everything else; you don't realize how good you've got it, until things get worse. I am no exception. On my worst days, I always try to remember that things could be much worse. As my neurologist said; "Maybe if I had lesions in my brain, I wouldn't care that I can't walk." (He was trying to be positive and funny). It helped put my condition in perspective. I have always had the attitude to work on what's broke, and let the less important stuff go. It may not work for everyone, but it works for me.
Thanks Kelly. I'm just trying to shed a positive light on a very negative experience we are all having in our own unique way.
Yes this is known as the invisible disease because all the damage is inside. Until you land in a wheelchair everyone says I look so healthy. I was fortunate in that I only spent 2 years in a wheelchair and was determined to walk again. It took me 10 months of getting muscle tone back to my legs so I could walk again without any aid. According to one of my neurologists, I should not be capable of walking due to all the damage done to the myelin sheaths surrounding the neurons. But, there again, stubborn redhead, don't tell me I can't do anything because I'll do my best to prove the doctors wrong. I still have no feeling from the waist down except for pain, but I'm walking. And hope to continue to. I just need the right meds. to stop the progression. Thanks for letting me vent and for listening.
I describe my MS as a defect in my electrical control panel. I say it is like when something is wrong with the electricity in your house. You never know which part of the house will have a problem, which is why MS can be so different in different people. When I am only using some of my power, I seems fine but when I try to use too much, can get easily overloaded and that is when symptoms act up.
My most noticeable invisible symptom to others is my loss of the sense of smell. Recently, I was talking to a neighbor in her garden and she picked some rosemary and gave it to me to smell. That is when I told her that MS affects my sense of smell. I don't remember if she knew before that I had MS but it really hit home with her as we were standing there contemplating the delicious fresh vegetables that I can not really taste. My lesions are mostly in my brain stem, so they affect my cranial nerves. It is amazing how much is controlled by that small part of my body.
An electrical control panel is a wonderful example for something so frustrating to explain to others who may have a hard time understanding MS and its impact! Smell is one that many do not even realize MS can affect. Thank you for sharing here, Nancy!!! - Kelly, MultipleSclerosis.net Team Member
Wow, talk about everyone being different. I have an enhanced sense of smell. I've even been teased by some friends in law enforcement that they could use me as a bloodhound. But there are drawbacks when I smell things that stink. Then I wish for a cold or my sinuses to act up. And being from Louisiana that's quite frequent. So everyone is not the same.Different strokes as the saying goes.
I was just thinking this morning how frustrating it is to have invisible symptoms. I have handicapped plates in my car and use them when I know I could be tired and hurting by the time I get back to my car. But I always feel like people are judging me when I park there but don’t shoe any visible disability.
, I hear you. It's frustrating to feel like people may be judging you for using the accommodations you have a legal right to! You should never have to explain yourself, but I know it's not quite that easy when you have an 'invisible' illness.
Gentle Hugs, Erin, MultipleSclerosis.net Team member.
