Who can relate?

122311342.1 (1)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. communication_quotes_pictures_images_photos_1650866423

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. communication is key

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. communication 1

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!

Hope for cureAlways, Alyssa

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12 thoughts on “Who can relate?

  1. I am getting much better at discussing my MS – I have kids and feel that they deserve me to to honest and, as I now have some mobility difficulties, there is no hiding it! The upsetting questions can be hard… but I just say that we don’t know what is around the corner and say hopefully I’ll stay the same… I enjoy reading your posts 🙂

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  2. I struggle with this as well, mainly with coworkers but I think also with friends who just don’t understand. Because I’m only 24 and have lived my life as a physically active person, my friends sometimes don’t understand why I have to relax so much or why I can’t go hiking, swimming, to the gym or whatever it is with them. I think the best thing I can do for them to understand better is use metaphors to explain my symptoms. My personal favourite is the feeling of soaking my feet and lower legs in concrete, cutting out giant blocks, and then having to walk around with those giant blocks on hahaha. As for with coworkers, that one is tough. People get burned out and stressed and in the heat of emotions may think you get preferential treatment. My priority for the person who understands my disease process is my manager. And I just tell him that if people want to discuss my symptoms with me, I am more than happy to enlighten them. If they would rather sulk in anger, not have their questions answered, and make assumptions then to me that sounds like a lot of negative emotions that they are experiencing, not me! Don’t let the haters get you down. You know your truth.

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    • I totally understand coworkers not understanding and or being judgmental! I have stopped trying to explain anything to them because they are very ignorant and mean people. They are just coworkers, not friends. They don’t really care about me and the feeling is mutual, not to sound mean. Luckily, all my friends have families and care more about doing things with their kids, so I don’t have to worry about them. We do go snowboarding in the winter and they seem to be understanding that I need to rest. Always remember, you matter and how you feel is WAY more important than what anyone else needs, thinks or wants from you. And as long as your manager is understanding, don’t worry about anyone else. How long have you been at your job and what do you do? Most places, if you have been there one year offers FMLA, which protects you. If you need to leave for a doctors appointment, you are covered. If you need to be out of work because of your condition, you are covered. You are so right, don’t let the haters get you down. WOW, we think alike. I wish you lived near me!!!

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      • I’ve been a registered nurse for over two years now and I have a kickass union and protection for myself and my employment situation so I’m very thankful for that! And yes, I wished we live closer too! I’m glad our love of writing could bring us like-minded people together 🙂

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      • You are quite an amazing person! I am sincerely thankful we have been able to connect through this blog! Now, I have a crazy question, do you love Canada? My husband and I snowboard and he wants to go snowboarding in Canada, hell he wants to move there! He loves the cold

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      • I looooove Canada!!! If you guys enjoy snowboarding you definitely need to add snowboarding in the Canadian Rockies to your bucket list, you’d love it here! I highly recommend Sunshine Ski Village in Banff, Alberta! Also, I feel like I have both a personal and professional opinion of the Canadian health care system and it’s amazing!

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      • That is great to hear! It would be great to see real snow again! I actually grew up in Vermont but moved south. It gets way too hot here, which as you know makes MS go crazy. We will definitely add this to our list and hopefully make it happen! There are many people from this area that moved to Canada for so many reasons. I heard health care is better as well.

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      • Yeah the heat would be brutal! It gets hot here in July and August but otherwise there’s snow on the ground from mid October to mid April so about half and half. If you ever come to Alberta let me know! 🙂

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