|My Personal Message Regarding Multiple Sclerosis
|I wish people would read more, which would stop speculations but allow actual knowledge of the matter that they presume and feel
freely to speak on.
With my illness, I find that more and more people who do not have either the illness, nor the initials, M.D. behind their name, are
ready to speak freely and openly without any knowledge of a disease that is often debilitating. If these ill-informers wish to share
their knowledge then please do those that have been medically diagnosed a huge favor and stop giving their opinions, but share their
wisdom. By doing so, it is a surefire that 1, they wont look like an fool while stating what they know and not what they believe and
2, will keep both the informer and listener from being uncomfortable.
When you speak, state what you know, not what you assume. Its okay to feel insensible, but when you speak falsely, the listener is
aware of your assumptions and will discount everything you say thereafter. Do not cheat yourself or knowingly deceive. If you don’
t know, then you don’t know. …"Opinion is ultimately determined by the feelings and not the intellect." H. Spencer.
All I can say is READ, and remember C. C. Colton’s adage and think, "When you have nothing to say, say nothing." (1780-1832)
Or, as someone once wrote, "Never miss a good opportunity to shut up."
Please try to understand that many doctors are willing to admit that just because they are doctors with years of study, that they do
not understand everything and that I am similar to them in the knowledge of the illness. In which case, I may be forced to cancel
planned outings at the last minute, as I never know from day to day how I will feel. Please remember that again it is the life of the
Do not assume that just because I look well, I feel well, as most people are aware that looks can be deceiving. And its not good to
make butt of oneself. Many days I look great, but feel terrible.
If you are really concerned, please take the time to learn everything you can as the more you know, the better you will be able to
deal and handle outings with and for me. Do not tell me about your friend or friends of friends who are managing their multiple
sclerosis, but remember that the illness effects each patient differently and most importantly, do remember that I’m not the other
person but am doing the best I can.
Do not tell me “It could be worse.” Yes, I know it could be - I don’t need reminded of that as stated, it is me and thankfully not you
who is experiencing the illness.
Please be patient with me and continue to invite me to your planned activities, but remember that just because I may not be able to
join in on all the fun, does not mean I will not attempt to enjoy myself. Please let me decide if I’m able to do certain things and
whatever you do, please do not take it personal.
Do not feel guilty that you can’t ease my problems, but please be eager to be there for me and that I am most grateful that you are
willing to be a friend. "If a friend is in trouble, don’t ask if there’s something you can do, but think of something appropriate and do
it."(E. W. Howe (1853-1937)
Please do not feel sorry for me, as I certainly do not. Although it may seem I have lost much, I am eager and grateful that I have
gained much more. No, I do not have extrasensory perception, but thankfully, my sensory of information has greatly increased and
is beyond the ordinary five senses of sight, hearing, smell, taste, and touch. I have an alternated sense of reality that most people
without the illness can not grasp. Today, I have greatly increased my common sense and forethought. Moreover, after my most
recent brain study, my current intelligence quotient reports 119.2. Again, don’t feel sorry for me, but be grateful that I have fewer
obstructions. (Also, I read A LOT!)
Do not tell me what I’m capable of doing. Let me decided what I can participate in. If I’m wrong I’ll know soon enough as only I
know my limitations. Please do not assume anything.
Please realize I am frustrated with the disease and limitations it puts on me, not with you. Please try to be understanding and not
Please do not comment as to how inactive I am, short of calling me lazy. However, understand, I miss the days when I use to be
able to get up from a chair, bed etc and run around for hours. Know that I miss hours of shopping, long drives, and that running, in-
line skating and riding my bike are activities that were once very important to me. Prior to diagnosis, I deemed myself a fashion
queen, but have since realized what makes me comfortable and less fatigued and now, to me, that is what is pleasing and
Please do not be so judgmental of me and say things like, “This illness is a pay-back from God because of sin.” Everyone commits
sin and that those words are not helpful, but are hurtful and does. But remember that men of ill judgement oft ignore the good that
lies within their hands until they have lost it. Remember that this could happen to anyone, even you! (Consider reading 2 Corinthians
12:5 - 11)
And with that said, my only advice is to those who have not considered it, talk to your human resource manager about disability
insurance. You may think you do not need it, but it certainly comes in handy when you least expect it. Or as the old adage goes,
Better safe than sorry.
Much love and appreciation,
|This video was created by Chelsae Heiner