For most people, despite appearances, living with Multiple Sclerosis isn’t easy. We’re plagued by severe fatigue, pain, spasms, and a bunch of other invisible symptoms. Life with MS is also wildly unpredictable, so we never know when these symptoms will pop up suddenly and cause us to cancel plans. In short, living with MS is like riding an unpleasant roller coaster with a lot of high points and low points. Because of the deceptive nature of the disease, it’s easy to be (or at least feel) judged much of the time when we are at one of those high points, when we are able to at least appear “normal” and have fun. With all that judgment, whether real or imagined, it’s easy to feel guilty for occasionally having a good time. I’m here to say that you need to move past that and to tell everyone that you don’t need to apologize for having fun sometimes. You’ve earned it!
Appearances are deceptive
I’ve talked often about the invisible symptoms of MS. Although it sounds crazy, many times, those symptoms not being visible to others can be the hardest thing for us to deal with. “But you look so good” is a phrase that I’m sure everyone with MS has heard at least once. That sentiment from others is made even worse when they do see you out and about or otherwise doing things that they think someone with a chronic illness shouldn’t be able to do. What people don’t understand though, is that no matter how we look, we’re probably still suffering inside. People may see me meet up with friends at a bar and think, oh, he’s fine, look at him. They can’t possibly see or know that, yea, I made it out, but my legs are in searing pain and I’m fighting back tears from it. They don’t know that trying to hold a glass is difficult because my hand has is weak and has tremors. They also don’t realize the adventure that every sip of that drink is, because half of my face and lips are completely numb.
Making the most of what we have, when we have it
If there is one thing MS has taught me, it’s to enjoy and cherish the good moments. I’m at a point in the disease where I do feel uncomfortable a lot, I have daily issues, and none of that is likely to improve. When you feel crappy all the time, you absolutely have to make the most of those times when you don’t feel as bad as you normally do. If my symptoms are bearable, you better believe I take advantage of it, because I know that may change at any minute. The reality of MS and many other chronic illnesses is that not every moment is the same. Like I said, we ride an unpredictable roller coaster every single day, we have to enjoy those highs whenever they might pop up because we never know when (or if) the next one will be. Please remember that if you see someone with a chronic illness out, they do so knowing they’ll probably end up paying for it later.
Haters gonna hate
Having a chronic and often invisible illness like MS can really highlight how judgmental people can be to others, even strangers. Many of us have had ridiculous experiences with people who attack us for using our handicap placard. I’m sure we’ve all been judged by people and we don’t even realize it. For some people, if they know we are disabled or have a chronic illness, even smiling in a picture on social media will be enough for them to think or even say something awful about how we’re actually fine and we’re faking it. There are always going to be those people out there. I always say that we need to educate them, but in reality, there are still going to be people who are just miserable and have to find a reason to dislike others. They have to judge them in order to feel better about themselves. There are a lot of great people in the world, but unfortunately, there are some bad ones too. There isn’t much you can do about that. You do have to try to not let it get to you though. You can try to educate them, but remember, their comments and thoughts are more about them than you. You can’t waste time and those precious good moments on them.
No apologies needed
It would be great if everyone in the world could understand and accept that there are diseases that are invisible. Even if you don’t have a chronic illness like MS, you might still have some demons you’re fighting. I’d love if everyone could read this and suddenly “get it”, but they won’t. We live in a world where we are constantly fighting an uphill battle against appearances and stereotypes. At the end of the day, you are what matters, and you must remember that no matter what your condition, no matter what evil you are fighting, you don’t have to apologize to anyone for enjoying some moments of your life.