Again, Who Cares?

Good reaction to, But You Look so Good. Clearly a potent subject. We seem to return to it from time to time. Maybe demyelination creates raw nerves. I wrote that I have stopped caring what people think or say. I do not think that is where most of you are right now.
Johanna asked a simple question. How should a healthy person greet/talk to a person with MS, and he/she knows the person has MS? Omit any reference to health and/or appearance? A simple question can have a complicated answer, certainly one that not all will get behind.
How about normally? Why would anybody feel compelled to bring health or illness into a greeting or casual conversation? I, for one, don’t need to be reminded of my health problems. If we are talking about a conversation with a real friend, presumably we know each other well enough to put the rule book away. Both of us can trust our instincts.
In a casual conversation, how about nothing? How are you? is among the most insincere questions in the language. Want to shock somebody? Tell the truth. That should shut him or her up for a while. Walking on egg shells must be tiring. When strangers ask me inappropriate questions about my limp or whatever, I shrug and say, bad leg. That seems to be enough, since they really do not want to know, anyway.
Maybe this is much ado about very little. I dropped the chip from my shoulder a while back. I hope we can stop driving ourselves crazy with concern. Who cares? I guess I have asked that already.

56 Responses to Again, Who Cares?

  1. Yvonne April 20, 2015 at 12:16 pm #

    Does a smile make the answer “shit happens” more acceptable? 🙂

    • Richard M. Cohen April 20, 2015 at 7:16 pm #

      Sure.

      R.

  2. Joan Z April 20, 2015 at 2:11 pm #

    I actually don’t mind the insincere “how are you”. We can (or not) answer to whatever level we want to”. My universal brush off when it’s simply intrusive, is “wow”, adding editorial via eyebrows. Another option is “why do you ask?”. Watch CNN for any length of time and it’s clear too many people view everything as their business. Not every question/text/email requires a response. I don’t think I’m that fascinating to others.

    • Richard M. Cohen April 20, 2015 at 7:17 pm #

      I believe we think what we never would say.

      R.

  3. Amy Corcoran-Hunt April 20, 2015 at 3:15 pm #

    As a 52-year-old woman I always assume they mean I look good, like younger than my years. One neglected problem with MS (at least mine which puts me in a wheelchair) is how other people look. Down here, from where I sit, I end up looking at a lot of derrières and muffin-top waistlines.

    • Richard M. Cohen April 20, 2015 at 7:19 pm #

      Oh.

      R.

  4. Jack April 20, 2015 at 3:23 pm #

    Maybe I am a little more tolerant of people’s curiosity than I should be. I have often had children ask me why I was in a scooter or why I used a funny-looking cane. I simply say that I have trouble walking. That answer is almost always sufficient. If I saw someone with a banana sticking out of his ear, I might be curious enough to ask why it is there. Why would I be offended when someone asks me why I appear to be out of the ordinary?

    On the other hand, sometimes I do get annoyed at the rare adult whose questions are obnoxious. I do not respond politely to “What’s wrong with you?” or “Did you have a stroke?” In my experience, most people have not been that rude. More adults ignore my disability than address it.

    • Richard M. Cohen April 20, 2015 at 7:21 pm #

      I child’s ingenuous question is its own category.

      R.

  5. Kat April 20, 2015 at 7:29 pm #

    When someone says to me “what is wrong with you?” I would say “what is wrong with you that you would ask me such a question?” Don’t mind so much when people tell me I look good. I’ll accept any complement.

  6. Nik April 20, 2015 at 8:12 pm #

    Who cares what other people think. Seriously. People generally suck anyway. They do. The truly genuine caring people are a shrinking breed. I was surprised how many people haven’t asked me how I’m doing after my major episode of CIS last summer. Then I remembered…people are to into themselves to give a damn about me anyway. So, I refocused. On ME!
    So now I’m on this real search for my own answers. Answers Drs can’t seem to give me. I’m reading and investigating. What does my body need to beat this. So that keeps me busy. To busy to remember that no one asks and that people might think I have aged quite a bit (and gained weight) in the past year from my STRESS and inability to Exercise. I forget, that is, until I read your blog Richard

    • Richard M. Cohen April 21, 2015 at 6:56 pm #

      You are on the right track. Ignore them. Trust your own instincts. They are what matter.

      R.

    • Mary May 24, 2015 at 1:41 am #

      Only a few people in my world actually took the time to research and understand MS. The others think I should be running marathons and Doing yoga every week.
      When someone asks me why I look so tired, I say because I am. They may as well tell me how bad I look.
      I don’t care anymore because if they knew what I thought of their weight, looks, poor clothing choices, loud mouth, etc, they would not even bother talking to me.
      A little bitter…. Yeah.

  7. Yvonne April 20, 2015 at 8:40 pm #

    It’s funny how adults tell their children”don’t stare” or ask “what happened” and I tell them it’s ok because the child is curious. I often wonder if they are uncomfortable because disease may not be something they want to explain or discuss with the child. Adults have no excuse as to why they would ask such a personal question. I don’t ask if baldness is hereditary or when did they begin to lose their hair because they look so young. I know people are curious but that’s not an excuse to be rude. I don’t bring it up because I don’t care to discuss my disease as a conversation starter. Hell most of the time I’m still in denial about MS and it’s been over 30 years!!! I believe most of us with chronic disease live for the moments when we can feel “normal. That may be my moment and a rude question can ruin it for me. So yes, I care.

    • Richard M. Cohen April 21, 2015 at 7:00 pm #

      I will take the innocent curiosity of a child any day. It is the adults who are the…south end of a northbound horse.

      R.

  8. Nik April 20, 2015 at 9:10 pm #

    Some people are lucky. They grew up in schools that had inclusion classes, that have other kids with disabilities. Or someone in their family was in a wheelchair (like my Nana). Yes, I consider those people lucky because they were around it, and experienced it and it doesn’t make them uncomfortable. We teach our students it’s ok to ask questions. It will help them grow up to be more understanding (and helpful too!) My 13 year old son prefers to read books that have a character with a disability. I think it’s helping him cope with the losses I have suffered. It’s all in the way we are brought up and are bringing up. I don’t know what happened to all of those rude people…but I just feel sorry for them!

    • Richard M. Cohen April 21, 2015 at 7:03 pm #

      You are doing good. More power to you.

      R.

  9. yvonne April 21, 2015 at 9:40 am #

    I have a question for the group, somewhat off topic. I saw Dale respond on a previous pst and I wasn’t sure if it was to my comment that I put on the “I’m OK ” facade when my family visits and then I’m exhausted for a week. How many off us put on that facade because you just don’t want to have 1 more conversation about how you’re feeling or what’s going on with the disease, stem cells, new drugs, treatments etc?

    • Joan Z April 21, 2015 at 11:54 am #

      Very interesting question Yvonne. No question I put up the facade, less clear is the why. Yesterday my sister in law dropped by, the power went out for 20 minutes or so, then a neighbor stopped by with her adorable 18-week old puppy. Nothing that should have left me exhausted, but there I was. I think it’s tiring holding it all together when my husband isn’t home and I just try to be “normal”. It’s less about nosy questions and unsolicited advice than it is
      about the energy expenditure trying to pretend I can still live the life I once had and enjoyed so much. Sometimes it’s the little dipshit things that take the wind out of my sails. I’ll be thinking about this topic for awhile. Great question, thanks for putting out there.

    • Dale April 21, 2015 at 12:52 pm #

      Not sure which reply, but I’m kind of a ‘fake it till you make it’ kind of person. And seems like you sometimes Yvonne, rather than get weepy I get pissed off.
      I know a beautiful 20 something gal with one hand that works in the elementary school, the kids are always asking her about it. She just says ‘I was born that way’ and shows them a new way to do things. She also exhibits amazing Faberge eggs at craft fairs painted painstakingly with that one hand. Seeing her and her new baby the other day was a good reality check.
      I’ve actually backed off jumping in a bit lately as there’s been a lot of sadness. Guess I need more good juju in my life right now. We just had the Boston Marathon yesterday with it’s ‘in-your-face we have a lot to be grateful for’ moments.
      Peace everyone. Keep the faith we’re gonna beat this thing. Even if it’s little victories. With all that’s gone on the past few months though, yeah I could use a big one right now.

  10. michael April 21, 2015 at 11:58 am #

    We constantly put on the “I’m OK” facade because of the long term nature of MS. People are used to sick people healing or dying. After a few decades we get tired of talking about it, and I’m pretty sure they are tired of hearing about it. And I really don’t blame them.

    • Richard M. Cohen April 21, 2015 at 7:05 pm #

      I am done with this subject.

      R.

      • MB April 21, 2015 at 8:42 pm #

        yay–me, too.

      • Dale April 21, 2015 at 11:19 pm #

        How about a blog sometime on the lessons your teaching your neat kids.

  11. Louise April 21, 2015 at 12:48 pm #

    I never complain because it will make the people who really care sad and /or scared and it will make everyone else avoid me. And I like to be the one doing the avoiding. 😉

  12. Jan April 21, 2015 at 12:55 pm #

    Here in OC briefly (and thinking I’m the only one who has never heard that acronym before–not a fad TV viewer, obviously), south of the land where “looking good” likely packs an even greater punch, I’m still pondering just when I can wield that fun “Quidditch” comment. (and still joyfully chuckling over that one). Or just “nerve damage” if more serious.

    But do I really place extreme value in looking ten years younger when I am in constant pain, can barely walk, and feel dizzy? (Okay, okay, sometimes vanity gives some sanity). My true friends don’t really distinguish. Nor does my husband, though he can (and does) tease me about that. After 24 years of marriage, he’s still here for me, as I am for him. I give his humor a bye (at times).

    While I feel that I can totally relate to and understand the posts and many subsequent comments, I’ve come to the conclusion that I am my own worst enemy. I want my old functionality back. (It’s not there). I have my health issues. (Others do, too). I’m not 20, 30, 40, or (yikes) even 50 anymore. (The baby of the family is getting older, too. It’s inevitable as long as I’m still breathing). It can be scary. (I don’t like what’s happening here).

    So while health stuff may always bug me at the core, I choose to be productive in ways that I am able. It just takes more creativity, more backbone (figuratively) at times.

    • Richard M. Cohen April 21, 2015 at 7:08 pm #

      And you are there.

      R.

      • Jan April 22, 2015 at 11:48 am #

        Thank you for your encouragement, Richard.

  13. grandma nancy April 21, 2015 at 6:28 pm #

    Yvonne….I guess I use the “I’m OK” facade sometimes because I can be stubborn and don’t want to admit to myself that I do need help. And sometimes I don’t want the people who care to feel bad for me. We all seem to cope in different ways.

    • Jan April 22, 2015 at 11:51 am #

      Grandma Nancy, I can totally relate to that.

  14. Yvonne April 21, 2015 at 7:52 pm #

    Thanks everyone. Sometimes it’s good to know it’s not just me faking it to make it!! 🙂

    • Dale April 21, 2015 at 11:14 pm #

      Nope. I pride myself on my acting ability. You should too.

  15. MB April 22, 2015 at 2:55 pm #

    But I don’t mind telling all of you how crappy the week has been.

    I came down with the aches and pains flu on Sunday which brought with it a new gift from MS—the “MS Hugs” which I had never experienced before. For those of you unfamiliar with this symptom, imagine that you’re a 36C (tougher to imagine for men) and you are forced to wear a 32A bra for 30-60 seconds that’s been doused with gasoline and lit on fire. This happens every hour or so for two days.

    I think when women burned their bras in the 60’s they took them off first. Wimps.

    • yvonne April 22, 2015 at 8:14 pm #

      That’s a new one for me MB and I’m 30+ yrs with this disease. Fingers crossed I get to skip THAT one!

    • rmcjourneyman@gmail.com April 23, 2015 at 9:19 am #

      I am having trouble getting that mage out of my head.

      R.

      • Dale April 23, 2015 at 9:27 am #

        I have your south end of a stubborn horse stuck. Your choice.

  16. Jenny April 22, 2015 at 3:46 pm #

    As a former educator, I see this blog as a way to help me learn. In the past, when I would get the “How are you doing” question, I would put on my happy face and say “okay” as most of us have done. But now after reading and thinking about this topic I feel we are doing ourselves and the MS community a dis-service. Shouldn’t we be a part of educating the chronically healthy about the chronically unhealthy? My response to the question now will be something like this: “thank you for asking, but today I am extremely fatigued or thank you, today has been a good day for me. My energy is good today”. If that leads to a further discussion that’s great. Effective communication results in understanding. Just my thoughts.

    • Linda April 22, 2015 at 9:36 pm #

      I’m with you Jenny. I was beginning to feel alone in the way I communicate with my family and friends. I give every day my best effort. Nobody can read my mind. Therefore,I have no qualms in voicing in a brief, and concise way how I feel. The good, the bad and the ugly.
      Friends and most family members really don’t care to hear the gory details of a tough day, but they do accept my non participation in some social activities. They show me respect with the understanding that “it’s nothing personal”. It’s my life and I’m responsible for deciding when, where and what I can handle.
      Jenny, I like the way you put it: Effective communication results in understanding. Effective being the key word.

    • rmcjourneyman@gmail.com April 23, 2015 at 9:21 am #

      More than I would say. like, thanks.

      R.

    • rmcjourneyman@gmail.com April 23, 2015 at 9:23 am #

      Too much information. How about thanks. Gotta go.

      R.

  17. Jan April 23, 2015 at 11:41 am #

    Jenny, I think that makes sense (esp. since my husband often gives me “the look” when I say, “Fine,” because he knows the real deal).

    Richard’s comments remind me of someone from my former town with six sons and her parenting advice of, “Be bright, be brief, and be gone” that works for me in other circumstances, too. (Ahem, well maybe not in some of my longer responses here, ha).

    And MB, I like your wit! Just may never put on a bra again without smiling (though that MS hug is no fun… sorry you deal with that). Heck, I’m in CA right now: maybe I don’t even need one?
    j.k., too modest.

  18. Jeff April 23, 2015 at 4:18 pm #

    Just saw this post from Tisch MS Center:

    TISCH MS RESEARCH CENTER OF NEW YORK REPORTS EARLY IMPROVEMENT IN STEM CELL TRIAL

    http://www.tischms.org/news/april-23-2015-tisch-ms-research-center-new-york-reports-early-improvement-stem-cell-trial

  19. Betty April 23, 2015 at 8:19 pm #

    Wonderful news from Tisch Research. Thanks for posting this Jeff.
    On the subject of “you look great” I try and stay open minded when people comment on my aura, and physical appearance. In my experience 10% of these people are totally shallow and insincere, and wouldn’t get if they had it. 50% just don’t know what else to say for all the reasons we all already know. The others are caring, and curious even if they might be lying when you look and feel like hell. But it’s “the others” I am most interested in, and you might not know who they are unless you engage with them. Often for me it goes like this, …”but you look so good”. I say, “why thank you, (and if they don’t know I have MS I will tell them) and question “do you know anyone with this disease?” It is surprising to me how many people will say yes, and I will say “who, and how are they doing?” and then it becomes a conversation that I am most always happy to have had.

    • rmcjourneyman@gmail.com April 25, 2015 at 7:03 am #

      Very personal choice, and there is no right or wrong. I choose not to engage, only to be polite and flee as quickly as I can.

      R.

  20. Jenny April 25, 2015 at 9:45 am #

    I would like to say one thing more. If not us….then whom??? If we close down communication and give the standard “thank you” or “I am okay” how can we ever expect the chronically healthy to ever “get it” at least a little bit?? And if that’s the case, we need to stop our complaining because we are part of the problem.

    • rmcjourneyman@gmail.com April 26, 2015 at 3:52 pm #

      Maybe we are, if you really believe in the sincerity of questions and the interest in hearing an honest answer. I have trouble with those.

      R.

  21. T April 25, 2015 at 10:06 am #

    The chronically healthy will never get it nor would they give a darn even if they did. MS is a solo disease and if you’re lucky you’ve got a spouse or someone there who tries to understand.
    Most people don’t give a hoot so why waste your breathe and energy trying?

    • dale April 25, 2015 at 4:32 pm #

      I absolutely agree with T on this one. No one can truly comprehend unless they’ve gone through it. Like having a baby or losing a loved one. But get it or not I’m still not scrubbing the broiler pan if someone insists on using it. Not good for my balance.

      God bless the people of Nepal and those trapped on Everest. Just heard a musher we root for is safe with his group at Camp 1 but worried about others at Base Camp they cannot reach. Something must have really pissed off Sagarmatha even more than last year.

    • rmcjourneyman@gmail.com April 26, 2015 at 3:54 pm #

      Maybe we are, if you really believe in the sincerity of questions and the interest in hearing an honest answer. I have trouble with those.

      R.I wish I disagreed.

      R.

  22. Yvonne April 25, 2015 at 11:03 am #

    Wow T. I thought I was the most cynical here but I think you got me beat. I do agree that most people only want the abridged version of chronic disease. Although probably a controversial opinion, I also agree that people who are “coupled up” can’t fully understand the solo journey of the chronically ill.

  23. Ann April 25, 2015 at 7:15 pm #

    After 7.5 years of people asking ‘how are you’ with that sad look in their eye, I have adopted a new answer. I cheerfully respond, “Not dead yet!” That shuts it down real quick. I’m sure people mean well, but I think what people are really asking me is if I am at deaths door yet or not, and how much longer I will possibly hang in there. (7.5 year survivor of ovarian cancer)

    • rmcjourneyman@gmail.com April 26, 2015 at 3:56 pm #

      How about a smile and, “Good.”
      Bye.

      R.

  24. MB April 26, 2015 at 6:53 pm #

    Here’s a Recap:

    Primer for Dealing With the Chronically Ill

    A. Don’t ask how they are because you really don’t want to know.
    Or… Do ask how they are but be patient when you hear a dissertation involving the trials and tribulations of dealing with a chronic illness.

    B. Don’t tell them they look good because they don’t feel good.
    Or… Do tell them they look good but be prepared to have your ass chewed out because it’s impossible for a person to look good when they feel so bad.

    C. Don’t fake feeling good because people won’t take the disease seriously.
    Or…Do fake feeling good because no one likes a whiner and complainer.

    Does that about sum things up?

    It’s no wonder why the chronically healthy don’t know what to do or say around the chronically ill. WE don’t even know what we want them to say or do.

    From now on I am going to limit my complaining to wondering out loud why Miley Cyrus abandoned her Hannah Montana image, or wondering why Justin Bieber just can’t seem to stay out of trouble even though he has such a privileged life or why in the name of Steve Jobs did Apple ever think the iWatch was a good idea.

  25. Jan April 26, 2015 at 7:58 pm #

    MB, I have no response to add to that other than to let you know that I personally appreciate your take on that (and humor, too).

  26. Dale April 26, 2015 at 8:38 pm #

    Simply awesome MB. Nailed it. Miley and the Biebes should volunteer to be the first couple on Mars.

  27. yvonne April 26, 2015 at 8:42 pm #

    MB that was worthy of a spot in the Emily Post book of etiquette under “how to deal with the chronically ill” Priceless :-). 🙂

  28. Dale April 26, 2015 at 11:13 pm #

    Anybody here use medicinal marijuana? Someone said it actually seems to be helping. Wasn’t ever my thing even in college, but do know an occasional half oxycodone really seems to help my legs. And it probably makes me look good too.