Most invitations sound great when they come, but for many with MS, it’s simply impossible to predict the way one might feel the day of the event. Symptoms can change, flare-ups can occur, and/or exhausting fatigue might set in. The desire to go may still strongly be there, but the physical strength and wellbeing are not. A response of “maybe I’ll be there” is often necessary for those living with MS, and sometimes, it’s the best possible answer to give. Recently, the MultipleSclerosis.net community was asked how they handle RSVP-ing to an event, and the results were very interesting and varied. A few of these RSVP approaches and responses are shared below.
Saying YES can lead to a lot of preparation and physical exhaustion
The physical pain and fatigue associated with MS can be so intense, especially after over exertion. This physical exhaustion can take quite a toll after saying yes to an event that proved to be a little too much for the body. Many living with MS have tried to focus on not over-committing when it comes to making plans, so as to avoid the physical consequences. Some even emphasized their frustration with others not understanding what is necessary for them to follow through with their plans.
“It does take an amazing amount of planning to go anywhere. And when we do go, and we are stumbling and exhausted and look weak and slow. But we are actually using superhuman strength just to even stay upright.”
“Sometimes we do things, knowing that we will end up ‘paying for it’ later but still want to do it anyway!”
“I did try to do some things I’ve been invited to this past week. Now I can’t get off the couch. I’m paying the price!”
“It is especially difficult in the hot months. When I push myself, I overheat, and end up sick, in the ER. One step forward, ten steps back.”
“Whenever I’m invited out, I start ‘getting ready’ mentally and physically a few days before.”
“No one gets it, they never understand the daily dilemmas we encounter.”
“People don’t realize there is so much to take in consideration before you can commit to go. Are there stairs? The weather, is there air conditioning? Where is the nearest bathroom? Will it be super crowded?”
Saying NO can be emotionally exhausting
Making plans and having to change or cancel them can be emotionally and mentally draining. It can be emotionally painful to miss an event, and feel left out. These feelings of loneliness or missing out can be even more frustrating when friends and family do not understand and misinterpret an individual’s absence. Sometimes these feelings can lead to a sense of defeat, where no becomes the only option.
“You have no idea how much it hurts to not go!”
“I had RSVP’d a week ago for an event a few nights ago. I felt ok earlier in the day but by the time 7 PM rolled around, my legs were heavy, I was terribly fatigued, and I had a headache… I didn’t make it to the event! I felt horrible.”
“I just say no to everything, it’s much easier than having people go out of their way for me.”
“I’ve stopped getting invited to a lot of things, it does hurt but we can only do so much.”
Utilizing the MAYBE
It’s extremely hard to make plans and keep commitments since no one with MS knows how much pain or fatigue they might be in on any given day. Although it may not be understood by everyone, sometimes a “maybe” is the only response that can be given.
“I absolutely hate having to say maybe. But it’s the best I can do.”
“I always say yes with a ‘but’. It doesn’t bother me to explain to people who don’t know me.”
“I really do wish my family, and friends would just try to understand this.”
“I’m a very, very last-minute person on things. If they can’t understand why, then they aren’t my true friends.”
“I tend to sound lame and undecided when faced with this issue. I don’t like being THAT person, and I know people get hurt because they don’t understand.”
“I’m always winging it. Some people think I’m just a ‘flake’, but my good friends know that I’m just taking it one step at a time… literally.”
“It’s so hard to make plans in the summer with MS. You never know what the weather may be like. The summer heat has made outings very difficult.”
Living with MS means accepting that day by day, or even minute by minute, life may change. It also means having to learn that a simple yes or no may not be a feasible response to an invitation. Educating friends and family on the difficulties that can arise as a result of MS, and saying “maybe” when needed, may be a much-needed approach to tackling the sometimes-frustrating topic of responding to an invitation.