By Lauren Kovacs

I know this is tough. We don’t want to be a burden by trying to connect. I have to remind   myself to let my MS do the talking. We might be having a bad day and we might sound drunk. We might be beyond exhausted or having pain. Connecting with non-MSers can be hard.

You have to take care of you. I often “hit the wall” so to speak and just can’t because of pain or fatigue. It is usually fatigue. If the moment presents itself, I will excuse myself from a conversation. If not, I try and quietly back out. I don’t owe anyone an explanation, even family.

Connecting with family and friends involves detective work. Reading people becomes second nature. You learn how much to say and how deep to swim into MS waters. Sometimes just a generic “I don’t feel well’” or “I am tired” to “the fatigue has hit” are often levels we can get to. Some just get, “I am fine.”

I admit, I have lied to strangers trying to connect. When I was asked by painters, years ago, why I used a walker, I told them it was a neck injury from college cheerleading when I was dropped. Not a total lie. I was a college level cheerleader, I was dropped several times, and I do have a neck injury.

I felt terrible about that connection and was truthful the next time. The response was the usual. They told me about miracle cures and their sister’s best friend’s cousin’s neighbor’s niece has MS and she did an Ironman Race and came in third. Blah blah blah. We have all heard it. Connecting can sometimes hurt.

This is where the detective work comes in. Strangers get the generic MS answer. Close friends and family get more custom replies. How much information to supply depends. You might tell your mom very little in order to not worry her; however, your friend reads about MS and they are somewhat safe to stretch into the deep end of MS with.

You can wade into the MS deep end with some. Others need to stay on the steps. We are not so lucky. We are thrown off the high dive several times a day. We are forced to swim to the edge any way we can. Often we get to safety only to be thrown off the high dive again.

Just try and remember to do only what you can. Connect on you terms. Don’t voluntarily jump off that high dive. MS will make you pay for days after. Connect on your terms.

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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