There is a fine line between concern and constant worrying about a person with MS. I understand the feeling of helplessness that comes along with being an MS caretaker or spouse. I have a parent with a chronic illness and I have seen the toll it can take on family as well as a spouse. Believe me when I say I get it. I understand the need to want to help. I get the need to be useful and the desire to not stand idle while an illness ravages a loved one. Also believe me when I tell you that a person with a chronic illness or disease never forgets the fact they have one. It might not be in their every thought or action, but they always know. It’s in the back of their head. It’s a nagging thought in the middle of the day, night, week or year. A constant reminder, however noble intentioned, is not required.
I am very blessed to have a world filled with support. My parents are my rocks; I also have a sister who is one of the best friends a girl could have. I have a family of friends that rally when I need help or support. They have helped me up when I have fallen, helped me grocery shop, driven me to medical appointments and have been sounding boards when I just needed to talk things through. I know that MS is something that makes them fear for my well being. I see the anxiety in their eyes when I try to descend a staircase (there have been many falls). I see the concern in their eyes when I appear to be having a rough day. Please don’t misunderstand me, I am extremely grateful. I know many don’t have the support I have. I am lucky and that is not something lost on me. However, at times the concern can be overwhelming. If I say I am okay, trust my answer. I promise you, if something is not right, if I do not feel well, I will say so.
I often wonder is there anything I can do to make things less worrisome for those around me. Is there something I can do to alleviate fears or allay concerns? If anyone knows of any such things, please let this crusader in on them. I am sure I want to fix these issues much like people wanting to fix my MS for me. No matter which end of the situation we’re on, trying to help is a natural instinct.
So while compiling information a person might find helpful, forwarding them every article on MS, or its medications, take a minute before hitting the send button. Most patients with MS already scour the internet and other news sources for options available to them. Take a moment and ask if they would like the information you’ve come across. Maybe rethink asking them if they feel alright that day. Perhaps have a conversation with that person and outline how you both feel about concern and information boundaries. I promise you we appreciate the concern and information you are trying to give us. Sometimes we just need a little room to breathe and process. Until next time my friends, keep up with the good fight.