Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things. This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”
Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:
No, you don’t “understand”
- I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
- I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
- If you don’t understand, at least be human and try. That’s all we ask.
- Sometimes I want to scream, “Stop telling me you understand when you have no idea!”
I might look fine, but I’m not
- I look normal but feel destroyed inside.
- When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
- Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
- I just hate the “you look good” comment. What should I look like?
I’m not lazy!
- When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
- I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
- I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
- It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be
How about you? How has your experience been communicating to friends and family about your MS?
I recently saw a quote that said “Negativity may knock at your door, but that doesn’t mean you have to let it in.” This really resonated because there are times in life that negativity does try to seep in and corrupt happiness and positive feelings. It emits toxicity and wants to take control over everything – and sometimes it’s hard not to feed into it and become consumed by it, especially when it presents with life circumstances that are unexpected and unwelcome.
It’s inevitable that at some point throughout life everyone experiences difficult times that unfortunately they have no control over. Things happen, obstacles or illnesses that we can’t foresee, but it’s important to know the aspects of your life that you do have control over. The people and influences that you choose to make a part of your life can be positive ones – you can make the choice to surround yourself with positive reinforcement and encouragement by choosing who you want to be a part of your inner support network. Are there times that we can’t control who are a part of our day to day lives? Of course. But sometimes you can control the frequency or duration of these interactions with others – even though sometimes this may be more difficult to accomplish. Let’s say if it’s family or friends that emit negativity, it can be more challenging to control and limit these exchanges because of the nature of the relationship. However, if there are moments that their negativity is all consuming and blocks out all that can be uplifting and positive, you can respectfully remove yourself from the situation.
One way to decrease negative energy is to purposely and consciously surround yourself with positive energy. Doing things you enjoy, communicating with others who make you feel supported and inspired and letting yourself experience good moments are ways to increase affirmation and optimism. When you have the chance to remove yourself from a negative encounter, be sure to book end it with a positive one, so that way at the end of the day, light conquers all.