“What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments

Articles titled, “What you should never say…” are pervasive on the web.   It seems like these posts focus on how rude people can be, how they are the problem, and how they need to change what they’re doing. I think this perspective gives away our own responsibility to our relationships. It can victimize us in situations where intent wasn’t malicious, and we may have the power to view it in a way that’s helpful to us.

Yes people can be rude and I understand the intent of the articles is to educate people, but the critical lecture approach worries me. I think they can discourage conversation and connection. In my experience most people aren’t intentionally insensitive, they’re just uninformed. Good for them that they haven’t had that experience that would have taught them more about having a disease or other challenging experience.

I’d prefer to encourage the dialogue and allow for grace when people put their foot in their mouth. An inappropriate comment doesn’t have to end the conversation or begin an argument; it can be a starting point.  I also think that telling people what not to say without giving suggestions for what to do instead just silences people and makes them afraid to say anything.

We all have moments of vulnerability and strength. What may feel right as a response in one instance may not feel right in another. I think everyone should be allowed the opportunity to snap once in a while, and I hope my relationships can be at a point or grow to a point where it doesn’t break the relationship. If we consistently snap at people, come back with sarcastic responses or witty retorts, we’re telling people to stop talking to us. And that can harm us by severing relationships and isolating ourselves.

As someone who in the past has been well-intentioned but awkward to friends that are experiencing disease and loss, I sympathize with people who want to say something helpful but don’t know what to say. I look back and see how my reaction to a friend with cancer was concerned and caring but may have come across as pity given my tone and ignorance.

At times when I’d describe a symptom I was having, I’d become frustrated with someone who would always say to me, it’s nothing, it’ll be fine, or it’s not that bad. I finally asked, “Are you saying it’s nothing because you’re trying to make me feel better?”  It surprised me when the answer was yes.  It was a huge shift in the relationship once I understood this, and I wouldn’t have learned this if I hadn’t asked. It validated my experience instead of denying it, and it helped me feel compassion for those that care about me.  It’s easy to assume what those close to us are thinking, because we know them so well.  Checking in and allowing for surprises or alternate motives allows for more productive communication and understanding.

We can get really good at communicating and understanding our symptoms and disease, but we’ll always have relationships with people that don’t get it. I can get frustrated that they don’t have an amazing grasp of communication, understanding or compassion; or I can work on bridging the distance between us.

There may be times when it doesn’t feel worth the effort to talk about a comment made, correct a misconception, or learn more about what someone thinks. I try to think of communication as an investment in the relationship and an opportunity for me to learn something new or gain a new perspective.  

My unsolicited advice to the person with MS on the receiving end of comments or questions: Lead by example for the level of connection you want to have with this person.

You don’t owe anyone an answer for a question that makes you uncomfortable. Ask them why they ask. Or just say you don’t feel comfortable answering that. If it’s just not a good time, you can say you don’t feel like talking about it right now, you appreciate them asking, and you’d like to talk about it another time.

If you do want to connect after being offended or hurt by a comment, consider hearing what might be the person’s feelings behind the words. This might take asking questions about what they’ve said. A helpful non-confrontational response might be, “tell me more about why you think that.”

The table below shows comments said to me about symptoms or my MS with my initial reaction, what I try now to hear instead, and what I’ve said in response. 

The perceived behavior	Actual Comments  said to me	My Initial reaction	What I try to hear instead	What I’ll say
Deny	It’s nothing, you’re fine.	You don’t believe I have a problem.	I’m worried about you and I want you to be fine.  I’m trying to reassure myself that it’ll be fine.	Are you saying that because you’re trying to make me feel better? I appreciate that you care. I hope It’ll all be okay too.
Misconnect	I have that too! Everyone has that as they get older. It’s normal.	You don’t get it. It’s not normal. For me, it’s due to MS.	I have that, I think I understand what you’re going through and I’m trying to relate. I want you to be okay, and I want it to be normal.	It’s true that aging and other conditions can cause similar symptoms.  It’s not normal for people my age to have this, and it can be frustrating to have to deal with this while I’m still young.
Overreact	OMG, it’s so terrible!!!  Your life will never be the same. I feel so sorry for you…	You pity me but don’t want to understand me.	I’m scared for you, and I’ve never had to deal with something like this. I don’t know what I’d do if it was me.	Thank you for caring. This has been a big impact on me and I’m working on doing what I can to live the best life I can.
Silence	Avoidance or awkward pauses	You don’t want to talk about it and/or you don’t care about me.	I don’t know what to say and I’m afraid of saying the wrong thing. I’ll follow your lead.	As you’ve probably heard, I’ve been diagnosed with MS.  I want you to know it’s okay to ask questions if you like.
Diminish	But you look so good!	It must not be as bad as you’re portraying.	I don’t understand how you can look fine but have a serious disease. I thought sick people always looked sick.	I know, isn’t it weird how people who look healthy can be really sick? Invisible symptoms are so deceiving.
Fix it	I know what’s wrong with you, and if you would just (fill in the blank here with a cure, a diet, a medication, …) you’d get better.	You’re not doing enough to fix your disease. If you would do more, you’d be fine.	I care about you, and I heard of something that might cure you.  I really want you to be cured.	I really appreciate you caring about me and passing along information you think might help!  Please continue to pass along things you see (only say this if you mean it). I’ll look into it. I talked to my doctor about it, and his opinion was… I already have looked into it/tried it, and unfortunately it hasn’t held up in studies/ worked for me. There are a lot of ideas out there about what can help. Unfortunately there are a lot of people making a lot of money off sick people.
Pity or Condescension	How (long drawn out) ARE you?  With a head tilt, sad face, and exhaling tone.	You pity me and think my life is over.	I want to connect with you, but your experience is foreign to me and I don’t know another way to talk to you .	Thank you for asking. This has been a big impact on me and I’m working on adjusting.
Blame	Disease is really “dis-ease”.  If you fix your stress or life imbalance, you’ll heal yourself.	You caused your disease.	I’m trying to understand why you got sick, and I want to protect myself from getting sick. I want to help you get better.	That’s a concept that makes a lot of sense, and a lot of genetic and environmental factors contribute to things beyond our control. I think we do the best we can, but sometimes it’s just the luck of the draw.
Disbelief	Unless you fall down on the ground, I won’t believe you have MS.	I don’t believe you have MS.	My experience with friends with MS has been people very debilitated by their disease. You look fine and are more active than most people I know. Maybe you’ve been misdiagnosed.	There are four types of MS, and your friend probably had a very severe type of MS. I put a lot of effort into being healthy and into accommodating and preventing the symptoms I experience. I’m fortunate that it’s working for me so far.

To the person who doesn’t know what to say or is worried about saying the wrong thing.  Say more, not less. Come from a place of curiosity and concern. Allow for the person to not want to talk about it. Certain symptoms are embarrassing socially, and not everyone is willing, able or ready to share such personal information with everyone or maybe anyone yet. Leave space for them to come to you when they’re ready, if they’re ever ready.

Consider saying things like, “I care about you and am curious what your experience is. What’s it like? How do you feel about having MS. How are you doing? I’d like to be helpful, but I don’t know how to help you.”  

I think when we’re able to see beyond the words that are said and put effort into understanding each other’s feelings and perspectives, it can only help us feel supported and respected. And that makes us all healthier and more compassionate.