No one really knows what you are going through in life, unless they themselves have experienced it firsthand. There is a difference between empathy and sympathy. Empathy is having the ability to understand and share the feelings of another. Whereas, sympathy is feelings of pity and sorrow for someone else’s misfortune. We all have probably experienced both of these at one point in our life.
Most people do not really understand the complications living with a chronic illness can cause. It is both important and extremely difficult to explain to others the trials and tribulations I go through pretty much on a daily basis. It took me years to admit that I had Multiple Sclerosis, much less talk openly about it with anyone. But now that I am comfortable talking about it and do not feel shame from the disease itself, I try to help others relate to me better.
Please tell me if I am wrong, but there can be a relatibility issue among our peers. Some people I have known over the years have either confused Multiple Sclerosis with Muscular Dystrophy or actually thought it was contagious. So many people have asked, “Why don’t you just have surgery?” or suggested in not so many words that there must be something I am doing wrong. My favorite line is, “Well, you don’t look sick. It must be something else.” Part of this is because most days I try to mask any pain I am experiencing, I always try to push forward with life. I have come to understand that many people just do not know about the disease, which takes me back to relatiability. Those who are not aware of what I go through, have no way of being able to relate to me at all. Communication is key in all aspects of life which include being able to explain how I am feeling.
My family and friends have a pretty good understanding of what I go through. My husband, Jon, always understands me and supports all my decisions regarding my condition. I have had him come with me to doctors appointments so he can hear firsthand what the doctor is explaining. I know decisions about medications and what I choose to do moving forward are ultimately my choice but I feel like my decisions can affect him as well. My mother and stepfather as well as my in-laws are very supportive. They all understand if I have to delay a family gathering or miss it all together because of the pain I am in at that time. Our friends when we go on snowboarding trips, understand that I need to take frequent breaks so I do not cause my pain to worsen or get to fatigued from all the extra activity. Even my job understands when I am in too much pain and need to go home early or miss an entire day so that I can rest. All of this understanding is because of how much I have communicated with each and every one of them.
Of course there are always those questions some people will ask that bother me. I was asked the other day if there was some kind of time line as to when I would progress further and possibly not be able to do the things I currently do. Now, I can not fault the person that asked me this as she doesn’t know anything about the disease and she doesn’t really know about my situation, all she knows is sometimes I go home early from work or I am not there at all. Although I was brief, I took this time to try to educate her on the disease. In the grand scheme of things most questions will not upset me too much. But questions about my continued abilities will more often than not bother me. When people think that I am not going to continue with my normal activities much longer it takes a toll on me. I am pretty stubborn and will continue to push myself so that I can live a normal life!
As always I want to ask you just a few questions. I read and appreciate all your comments and always respond to them as soon as I can. How do you handle explaining your disease to others? How do you handle answering the questions that are a little upsetting? I hope you enjoyed reading this post and I appreciate all your support!