I talk to so many Fellow MS'ers everyday and I listen to what each has to say. Life with Multiple Sclerosis is a Day to Day battle. Some days may be better then others but even on those days we have pain and still carry Guilt and Depression everyday.
We carry our own guilty feeling and battle our own depression every hour of every day, but we also carry the guilt and depression brought on by our loved ones. There are some that have very understanding loved ones, but even they will slip at some time with a comment or two. Here are some of the most major MISCONCEPTIONS and random quotes from some of the people I have talked to and I have faced myself. I want to add some clarity to those misconceptions.
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I want to start with a quote from a friend I just met with Multiple Sclerosis.
" Tara, How do you do it? I survived Cancer and then a few years later I was diagnosed with Multiple sclerosis. The battle with Cancer was a walk in the park compared to Multiple Sclerosis". I couldn't believe I just heard her say that. Here as soon as I heard the words Cancer I felt guilty myself and was thinking "Wow, there are people with diseases worse then me and I felt ashamed and guilty, but wait..."fighting Cancer was a walk in the park compared to Multiple Sclerosis"??? She then went on to say, "I am a quadriplegic now because of the MS".
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"You are Just LAZY" - Can you believe that people would just blatantly make that comment? Well don't be. I was stunned that some people hear those words from their Friends and Family. While others hear the same comments but not so harsh. For instance, " Your home all day while I work and then I have to take care of everything here at the house. I wish I could just lay around for a day or two".
Answer : There is nothing we want more than to be able to get up and clean the house, go outside and play with the kids or spend more time with the family. We feel guilty and depressed about what we can or can not do. There is not one of us MS'ers that said "when I grow up I want to be sick with a disease that would change and drastically affect the rest of our lives. When you see someone with Cancer, or a person with an amputated leg. You would never think to make that comment. So why is it OK to say it to someone with Multiple Sclerosis?
"You never come out anymore so I just stopped inviting you". "We can never make plans because you never know how you are going to feel"
Answer - In our heads, we would love to make plans to do something. It gives us something to look forward to. In reality, we know that by making the plans there is a GREAT possibility that we will have to cancel or we are symptomatic and would make those plans miserable. There are so many of us that have lost friends especially due to this situation and some even have lost family members. If only there was a way for Non MS'ers to feel what we go through all day and night, I think Non MS'ers would understand.
"Maybe if you would exercise more and get out of that chair or bed, then you would feel better"
Answer - Well, No Shit Sherlock.... (Sorry for the language) Isn't that the case for anyone? You don't think we have that go through our heads every minute of everyday. When you (Non MS'er) complain that you have to go mow the grass or go play catch with our kids. We would do anything to take your place. That of course isn't possible. And on the off chance that we are having a good day, we do go for that walk, or try to clean, or do something active. We know that we are going to suffer for it later that night or even the next few days. I am one that does whatever I can fit into a day on my "Good Days". To me it is worth having to suffer the consequences for a few days.
One of my favorite's "But You Look So Good".
Answer - Thank You and of course "I look good" our symptoms, for the most part are all internal and unseen in other's eyes. This is where, in my opinion, that Educating people about MS would be wonderful. You can't see most of our symptoms and either can we. One example is the "Pins and Needles" sensation that most of us feel. It's not like we have pins and needles sticking out of our skin... It is weird to explain and I am not a doctor. The best way to describe it is like there is an imaginary person rolling cactus's up and down our body every few minutes constantly. There is a whole scientific definition as to what is going on and how to explain what the reason is behind this, but my point is to say it in laymen terms so it makes it easier to understand.
**HINT**~ If you ever meet someone with MS, Fibromyalgia, and many other diseases. Don't ever say "But you Look So Good". It is the most dreaded words to hear out of someone. Personally, I just cringe and want to punch the person in the gut and let them react as anyone would in pain.... But because we don't see the pain, say to them..."Oh, But you look so good" and walk away.
Making the comments of..."I know someone else with MS and they don't have the same issues as you. Why can't the Doctor's fix you and give you medications to make you feel better"?
Answer - First of all there are different types of Multiple Sclerosis. There are also some that are more aggressive or symptomatic than others.
I think that when someone with MS,Fibromyalgia, or any other disease is diagnosed, Family and Friends should have to take an obstacle course, that would make them feel what we feel (Physically and Mentally. I am not saying this in a mean or vindictive way. I just truly believe in my heart, that then and only then will people understand us better and only then, will anyone understand even the slightest, what living with a disease or handicap/disability is like. I could go on and on with more MSunderstandings but it all boils back to the same answer. "You will never get it, until or unless you get it"
***The best thing a "loved one" can do is learn, educate yourself, and listen. By learning about the disease, it will help with the MSunderstandings and keep good relationships with your loved ones.
