It was recently I had someone say these words: "I could never deal with having an illness for the rest of my life. But, god bless you." My instant thought was, “Why would anyone say that aloud? Let alone to me when I will, in fact, live with multiple sclerosis (MS) for the rest of my life!” I kept my composure while trying hard not to say some explicit words. I gave a slight smile and found a quick excuse to make my exit.
Living with MS comes with difficulties. However, one of the most undiscussed struggles are navigating moments like this. I know conversations like these are meant to be "kind" or "considerate," but honestly, they are insensitive. These statements often miss the mark entirely, leaving those with MS feeling misunderstood, hurt, or even frustrated. As someone who has encountered moments like this too often, I've learned a few ways to gracefully combatting these remarks. Here are five things that have helped me:
Educate, Don't Berate: I know this is much easier said than done. But lashing out in the moment helps no one. When I faced with the comment you read above, it was very tempting to blow my top. But, I've learned that taking a moment to teach the person can be a lot more productive. Politely explaining what MS is and how it affects you can help them understand why their comment was hurtful. One thing I do want to highlight. I make sure not to over-educate or keep repeating myself regarding my illness. If someone is in my life, I expect them to do some research themselves to understand MS better. This is my lived experience and I expect people in my life to come to terms with that.
Share Your Experience: Sometimes, people make insensitive remarks simply because they don't know any better. By sharing your personal experience with MS, you can help them see things from your perspective. For example, you could explain how comments like, "You don't look sick," can be invalidating, even if they're meant as compliments. This one is a big pet peeve of mine. My usual response is, “I get what you mean. But, sick does not have a look. A lot of my symptoms are considered invisible since they are not apparent when looking at me. Unseen but not unfelt!”
Set Boundaries: It's okay to establish boundaries with people who consistently make insensitive remarks. Let them know that certain topics or comments are off-limits, and don't be afraid to enforce those boundaries if they're crossed. Remember, you deserve to be treated with respect and understanding. Mine are policing my food. MSG is a big trigger for me. Often my family will provide commentary on what I chose to eat. I just give a quick reminder that I’ve been living with MS for four years now, and I know what triggers me. But, thanks for the concern.
Focus on the Positive: While it's easy to dwell on the negative, I'm working on focusing on the positive aspects of my life, which can help me brush off insensitive remarks more easily. Surround yourself with supportive friends and family who uplift you, and don't be afraid to lean on them when you need a little extra support.
Lead by Example: Finally, remember that your response to insensitive remarks can set the tone for how others perceive and interact with you. By responding with patience, understanding, and grace, you can help educate others and foster a more supportive community for everyone affected by MS. Remember you are human. If you get short-tempered or frustrated, it is okay. We are doing the best we can to navigate all aspects of MS. Always give yourself grace.
Navigating insensitive remarks can be challenging, but it's important to remember that most people aren't intentionally trying to hurt or offend you. By educating others, sharing your experiences, setting boundaries, focusing on the positive, and leading by example, you can combat insensitive remarks with grace. Together, we can create a more compassionate and supportive world for those living with multiple sclerosis.