National Multiple Sclerosis Awareness Month || "But You Look Great!" and an aside about reverse ageism

I posted a list of things NOT to say to an MSer recently, and more or less I stand by that list. But I have to say, it's tough getting around this one:

"But you look great! (or...fine! or...healthy!)"

-or-

"But you don't look sick..."

A lot (maybe 95 percent?) of my MS peers absolutely hate being told this. I used to find it annoying. Not so much anymore. In fact, when I hear "you look great!" I feel pretty good, like something's working for me. And I feel some relief, too, because there's a weight to this secret I carry around with me, which I can't share (at least not yet) at my workplace, and when somebody says I look great, what they are actually saying is I pass for normal.

Anyhow, who DOESN'T like to be told they look great?

Well, when you feel like crap all the time and you are deep in the trenches with an invisible illness which bombards you constantly with reminders of its existence, it's easy to take the comment "But you look great!" as a kind of denial or trivialization of what you are going through.

The fact is, people say this because they want to be supportive, they care, and they don't wish to deny you anything. They may not understand what you are going through, but their hearts are in the right place.

I think my cohorts dislike this phrase because it makes it harder for them to convince others that their illness is REAL. So let's get this one thing out of the way right now.

People without MS, please master one simple truth: 

If the MRI and the blood tests and the lumbar puncture and the 

neurologist and the patient all agree that it's MS, then IT'S MS. 

It's not some version of hypochondria the MSer is putting on to gather 

sympathy or special favors from others. It's not an excuse to get out of 

chores or job tasks or physical labor or parenting. It's not something 

any of us MSers hope to have so we can live a life of leisure. 

Capiche?

Of course it seems ridiculous to reasonable, educated, compassionate people that anyone should assume that someone with MS is a hypochondriac, or lazy, or a system abuser. But it happens all the time. Not so much to me (in fact, I don't think I've really experienced this at all).

HOWEVER, AN EXAMPLE...
Just today I heard from a youngish peer that she was getting out of her car, which was parked in a wheelchair access spot at the grocery store, with her cane clearly in use, and an elderly man caught up with her and told her to save the spot for someone who needed it. Here is my peer, standing there, CANE IN HAND, and the man, who walked up to her of his own volition, with no need for an assistance device, was suggesting she was a fake. When my peer learned the man also had a handicap parking permit, she politely told him, "I have multiple sclerosis," then asked, "And why do YOU need YOUR permit?" His reply? "Because I get tired sometimes."

I'm not going to say that the elderly man's needs aren't legitimate. I work everyday with elderly people who are tired all the time. It sucks being tired all the time. I get it. I, myself, am tired. All. The. Time. But why in the world would someone decide that a younger person with a cane didn't also deserve the same privileges they enjoyed as an elderly person who gets tired sometimes?

There probably aren't enough handicapped spots at the store these days. Between a growing population of elderly people who need some additional assistance and the fact that there is now greater, more expanded access for all disabled people (which is actually a good thing... we want people in our society to be independent, after all), we might rethink the number of slots available to people who need them. In a perfect world, people of all ages and with all legitimate concerns should not be put in the position of fighting over access to handicapped spots. Certainly none of them should be judging the other as to the general worthiness of their disability in the first place...

Before anyone gets their panties into a bunch, I am not trying to demean the elderly here. This is not the first time that I have heard stories of elderly people mocking or judging or accusing young people with disabilities of abusing the system in some way. The elderly are not saints just because they are elderly. Some elderly people are perfectly lovely and some elderly people are perfectly unlovely. This reflects the truth about every age demographic.

I mostly wish to use the example to point out that MS is a disease that frequently and primarily ravages the young. It can necessitate the use of a cane or the use of a handicapped access spot for someone as young as their teens because (and I have felt this keenly more times than I wish to recall right now) MSers of every age are freakin' EXHAUSTED and IN PAIN and THEIR LEGS ARE NUMB OR FEEL LIKE THEY ARE MADE OF LEAD. I myself can barely make it in and out of the store sometimes without thinking constantly about using that bench seat near the pharmacy for a nap just to get through the otherwise simple chore of buying milk.

Most of the MSers I know who are dismissed as lazy, faking it or somehow imagining they have the illness are young people. Our society demands a lot from our youth and when they get struck down by something like MS, it's twice the curse. If you are older, people will accept your disabilities as part of being elderly. They will go out of their way to help you, even. But if you are a young person, it can be a much harder world out there. You still need to work to pay your bills and be present in your role as a parent and/or spouse. Sometimes you are suffering the ides of MS while simultaneously caring for an elderly or disabled family member as well.

In a sense, deciding that young people with MS or other chronic illnesses or disabilities don't deserve the same respect as the elderly is essentially enacting a form of reverse ageism, which is in no way more acceptable than the opposite. Nobody is more or less worthy of compassion and assistance just because of their age demographic.

BACK TO MY POINT
I want to add that I think the kneejerk response, "But you look fine!" happens without any harmful intent for a couple of less obvious reasons:

1. When someone you know finds out you have an illness, one response is fear. Could it happen to them? Could it be contagious? Could they lose their loved one? The statement "But you look fine!" is really them fending off nagging fears that even their lovely friends who work hard, have families and give to their communities are not immune to chronic illness. If you look fine, then it must not be too bad. And they think this not because they wish to reduce the severity of your condition, but because it comforts them to know that, well, okay, you look good, or well, or fine, and that means it's not threatening. We know the truth, and so do they, but there's a heartfelt act of grace inside these words that should not be overlooked.

2. Some loved ones in our life are generally positive people and when they say "But you look fine!" they are truly trying to be your cheerleader, a motivator, a coach. They want to lift you up and say, look at you, you are winning! I'm "guilty" of this myself. I have said the same thing to loved ones with cancer who probably hated me for saying it to them, but my intent was never to diminish their suffering, but to express, honestly, that they still appear healthy and lovely on the outside and, to me, that's a great sign, even though I intellectually know better. It's my impulse to look for silver linings, bright sides, hidden blessings and, heck, if you look hearty and hale on the outside, then rock on. Just spreadin' some good vibes!

So that's where I stand on the issue, though I know it's complicated and many people will disagree with me about my last two points.  I think, ultimately, that though we all have absolutely NO CONTROL over what others say to us, we DO have control over how we respond. and we DO have the ability to be discerning about the motivation behind their words.

So I have a new system for dealing with this. When somebody says, "But you look fine!", I assess their intention, not with my eyes, but with my intuition, to see what's truly in their heart...

And you know what? Most of the time... it's love.

National MS Awareness Month || Don't put me in a box, pine or otherwise

That's a interesting phrase... "Don't put me in a box." It was meant to convey resistance to conformity. But it also makes a more subtle morbid suggestion, that some might, by deciding you are "done" because of a disease, also put you into a (pine) box (metaphorically, of course).

In other words, when you receive a diagnosis of MS, it's bad enough that you are confronted with your own personal mortality. But tell your friends, family members, acquaintances and they will often, without even meaning to, decide to either put you in a metaphoric Disabled Box (even though you may not have any outward evidence of your condition) or break out in tears and grief because they clearly think your life is over and you are headed for none other than the metaphoric Pine Box.

I thought a lot about this today because I am anxious about revealing my diagnosis to my boss, my coworkers and others who I work with as part of my job in the allied healthcare field. I haven't told anybody anything because, first of all, having MS for me does not mean I am disabled or will be disabled any time soon. I do not have any need for accommodations at work; I just got my job review and it was all good.

Still, it's hard to carry that information around with you and not share it. Or at least it is for me. Others, I know, would rather just bury it and never talk about it again. I understand that impulse too, though it's not my style. I'd rather just put it out there and move on.

Except I've learned... sometimes, when I put it out there, I might be able to move on, but others who don't know much about MS might not be able to. Some of the kinds of changes I've noticed in the behavior of friends and families include:

1. A nagging sense that they believe you are weak, or frail, or incompetent now, even when there is no outward evidence of this. Note: Disabled people get this vibe from their functioning peers 24-7.
2. Disbelief on their part, either bundled with suspicion that you're faking it, or just general inacceptance of your DX. Note: Disabled people get this vibe from their functioning peers 24-7, as well.
3. A kind of mourning every time you encounter them, like they are afraid for your life and gush with more than their typical positivity because, maybe, they think you are inches away from dying even though, truth be told, you might actually feel a lot better now than when you first told them about your diagnosis. Note: Disabled people ALSO get THIS vibe from their functioning peers 24-7.
4. Forgetfulness. You are moving on. They may or may not think you are sick, or cured. They have simply forgotten this is something you deal with 24-7 because it is an invisible illness. Disabled people with invisible symptoms also totally understand this challenge. 

Number 1 is my reason Number 1 for not telling my boss and coworkers and contemporaries in my career field. They like me, they think I'm good at what I do. They believe in me. This is no small thing. It means that, not only do I have a job that pays decently, and a career that I really love and am challenged by, but I have their faith in me as an additional reason to get up every day and keep going. I believe in myself because they believe in me (and it works in reverse as well).

I was thinking about this today because I had a meeting with some of my cohorts, and one of them (I'll call him "Joe") in particular has set his sights on grooming me for a bigger role in this organization we are developing. Part of me is all "Awesome, I have a great opportunity here not only for my career but to work with people who share my passion doing things that make the world a better place!" And then, part of me is all "But what happens if my MS progresses and all this faith Joe has placed in me will be wasted if I then have to bow out of commitments because I am too sick to fulfill my duties?" And then, yet another part of me is all "But if I tell Joe now, it might mean he stops having so much faith in me and begins to believe I am weak, or frail, or incompetent" (see point #1 above).

While it bothers me that my family is sometimes guilty of point #4 (above), that is a separate recurring concern in the workplace, that regardless of the truth, Joe might still expect me to take on challenging tasks that I might not be up for, forgetting I have some limitations because MS is so utterly invisible for me. Then I would have to bring it up to Joe, again and again, like my family, so that they could realign their expectations. You know, I don't want to be that kind of cohort in the professional realm. I only want Joe to know and trust and respect me for my ideas and hard work and heart. I don't want or need sympathy from him.

So when I left to go to this meeting this morning, I was thinking, Hmmm, maybe I should just tell Joe my secret after the group meeting, a secret which burns a hole in my conscience like money burns a hole in one's pocket. And I practiced how I would break it to him, and felt good knowing he would keep mum. I know he has placed a lot of trust in me in my role in this developing project, and I don't think he would reveal my secret to anyone else in the field.

And then we had our meeting and I ROCKED IT OUT. I was articulate, my ideas were smart and accepted by people much smarter than I am, and they all thanked me for my particular contribution of awesomeness (which is in tracking communications for the team).

So I didn't say a word to Joe. Why should I? What would I gain except that the hole in my conscience would stop burning? Regret can burn a hole in one's soul, too, and today I felt like it would be a mistake to say anything, that it might even lead me to a whole boatload of regret.

I don't know about you, but I don't think living with regret is a better substitute for carrying a secret which, if not revealed, may never negatively impact anybody else in any meaningful way.

But it's still hard to carry around and I'm so grateful that I have so many friends and family in my life who are great about listening and inquiring and showing their support and not treating me like a leper for it!

As for points #2 and #3, I've had some experience with both... Disbelief among peers in specific circles that I've had to leave because my involvement there was more or less optional and the stress level was more than I wanted to manage then or now or ever. I don't think I have run across anyone who thinks I'm faking it, though I hear these horror stories from fellow MSers all the time. And I've had a couple of friends who responded immediately to news of my diagnosis with tears and fear and horror. It's sweet of them, and I love them for caring so much. But every time I see them, I can tell they are wondering how much time I have left. My neuro said the odds, of me living out my life actively and to the extent of my assumed nonMS life expectancy, are overwhelmingly in my favor, and I've shared that with these friends who I think of (archly, and only to myself) as loving undertakers. My hope is that time will ease their fears and they will see that hope is the real engineer behind everything I do.

Just a quick note: most MSers are advised by legal counsel to not reveal their condition during a job interview and to be very judicious about sharing that information with coworkers or your boss if you are diagnosed while actively employed, especially if you do not show outward signs of mobility issues or other deficits that could impact your job performance. However, once hired, some employers have HR departments that WILL ask ALL of their incoming employees specific questions about preexisting health conditions (hospitals are one such kind of employer) because they need this information in order to serve everyone's needs for job accommodations etc. Still, HR is forbidden from sharing this information with your boss or direct supervisors or coworkers thanks to the ADA and, to some extent, HIPAA privacy laws. Suffice it to say, HR knows about my condition, but when I told them, all they asked was whether I needed any devices to perform my job, and then, because it's a medical employer, they were caring enough to ask me how I was doing. When I told them I was taking (and tolerating) my meds and feeling great and shared the positive notes my neuro had regarding my prognosis, that was the end of the conversation.

If you are an MSer and you struggle with disclosing your condition, especially in your work environment, because you fear for your job security, you can check out all kinds of resources through the National Multiple Sclerosis Society. The article, "Should I Tell?", is quite instructive and while it reveals how complex it is to be an MSer in the workforce, there are lawyers at the national and state levels who can help you decide how to move forward with revealing a new diagnosis at your current job or how to answer touchy questions about your health during the process of landing a new job.

National MS Awareness Month || What NOT to say to an MSer

National MS Awareness Month || March 3-9, 2014 is NATIONAL MS AWARENESS WEEK

If you have MS or know someone who does, I hope you'll visit the Raise Awareness page at the National Multiple Sclerosis Society website. They have tons of tips and resources for spreading the word about what multiple sclerosis is and what is being done to search for its cure.

What's on my mind besides scar tissue... dealing with crowds on Super Bowl Sunday

Just posted this in a closed Facebook group, but wanted to share here. 

---

"Just sent my family a love note in email asking them to check out some links on brain fog, noise sensitivity and mental fatigue. They just don't seem to get it when I tell them in person.

PS I have an 18 year old daughter who has no interest in driving. This is especially problematic for me given her work and activity schedule. I have had to put my foot down and tell her she needs to take that responsibility on herself, because I don't have the energy or time and it's something important for her to learn and would be a major way she could contribute to the family. 

Imagine all the quick errands she could run for us when she is around--"please pick up your sister from dance," "please go to the store and get some milk," "please drive yourself to nighttime polo practice so I can put my pajamas on and go to bed early." 

However, my husband spoils her and drives her everywhere... so when he's not around, and I shake my head and say "sorry, not gonna do it," I end up being the bad guy. 

This is perhaps one of the bigger problems I have with MS, convincing my family that it's real and that they can either help me or hinder me based on the choices they make as well. Very frustrating."

---

This is one of the harder things to manage when you get diagnosed with an illness which bedevils you with mostly unseen or invisible symptoms. People around you forget you have it, or they don't stop and think, hmmm, maybe she's acting like that because of her condition, or they just look at you like you're crazy. 

You can tell your family all kinds of things about MS. And sometimes they will listen and understand and be receptive, and sometimes they will put out a signal that says, "you know what? I don't want to know more, because it means that you are possibly getting sicker and I can't deal with that." 

Here are the topics of my email below with the links I passed along, which I'm posting in hopes they will help somebody else out by either illustrating the cognitive realities of MS or giving them the tools to explain or express their challenges in these areas. I'm open to hearing others share their stories about getting through this sensitive relationship issue related to MS, as well.

1. Brain fog describes a slowness in processing memory, language, external stimuli, new learning, even emotions.

LINK: 

• Basic explanation || What is brain fog or "cog fog"?

2. Noise sensitivity is just that: one low decibel sound is fine, but a buttload of sounds all at once? AWFUL. My brain can't make sense of any of anything when I hit a saturation point. I cease to be able to hear (or see) sounds in a way that registers comprehension. It's like the spinning hourglass on my computer is now spinning right before my eyes, but others around me don't get the benefit of a "please stand by" message. (In my case, I can also have visual sensitivity--too many bright lights, imagery, motion added to all the noise is pretty much going to mean I need to go hide somewhere for a while.)

LINKS:
• Some explanations re: noise intolerance || http://ms.about.com/b/2010/12/14/q-are-you-noise-intolerant.htm 

• MS Blogger Matt Cavalo's experience w/noise intolerance || http://www.mattsms.com/2013/02/noise-sensitivity-stress-frustration.html

• Forum answer on question about MS and overstimulation || http://www.msconnection.org/Discussions?forumid=25&threadid=34895

3. Mental fatigue happens when there is just too much to process... it is the outcome of sensory overstimulation as described above. When mental fatigue hits, it's because I've used up all the energy in my brain in the act of trying to process everything, and now ALL SYSTEMS are slower or even stopped. So if I've just been to the grocery store, and it was crowded, that's almost certainly going to lead to a nap, which is the only way the brain can restore its fuel. However, if I just went for a 5-mile walk out on a hiking trail, I'll be energized because I wasn't bombarded by frenetic noise and visuals, I wasn't trying to think so hard while walking. That's what makes it different from physical fatigue. And it's not about being sleepy. That's caused by a shortcoming in my wakefulness drive, not because of mental fatigue. I just tend to need to sleep to recharge my brain when it's been overloaded. (And ditto when I have a migraine and don't have access to my Fioricet.) 

LINK:

• Mental fatigue basics || http://www.dummies.com/how-to/content/understanding-how-multiple-sclerosis-can-affect-yo.html

4. Planning ahead when crowds, noise and overstimulation are likely is another way that both and MSer and his or her family can be proactive so that the MSer can better cope when necessary. I am anticipating a trip to Hawaii this spring and hope my family will see that my goal is to CHILL at every opportunity. And if they want to do the high-stimulation thing, they are welcome to, but they should not be angry or disappointed with me if I beg off and choose to lounge in the shade and read a book instead. Nothing personal!

LINK: 

• One MSer's encounter with Disneyland, or how to take the stress out of family vacations || http://www.healthcentral.com/multiple-sclerosis/c/73302/66804/mickey/ 

PS... I do plan to go to a very noisy Super Bowl event this afternoon, and I'm wearing comfortable clothes and have already located a place to take a quick nap or duck out of the mayhem if necessary! I'll also have my migraine meds with me and modafinil for wakefulness is already in my system working its charms. I'll also avoid obvious energy busters like high fat and high sugar and stick to iced tea and water with lemon to stay hydrated and slightly caffeinated. 

5. Occupational therapy can help to alleviate these problems. MSers and their families need to know there are some helps out there that are covered by insurance and can really offer some relief. Also, I'm wagering that if my family realizes there are entire medical professions set up to help me out with these symptoms, then they'll perhaps realize how much this isn't "all in my head," but real, and treatable, like any other illness or injury. 

LINK: 

• Cleveland Clinic occupational therapy offerings || http://my.clevelandclinic.org/neurological_institute/mellen-center-multiple-sclerosis/treatment-services/hic-occupational-therapy-at-the-mellen-center.asp

Hey, I have to say, my family is better than most. I know they know I am sick and that these are part of the problem, they just tend to forget because my symptoms are not always obvious to them. I know families who think it truly is all in their loved one's head, that they are either weak or lazy or faking or just trying to get out of responsibilities. What a horrible way to treat someone with a chronic illness for which there is no cure! So I still give my family a big thumbs up for at least trying, and for the fact that I can send them an email with these links optimistically, knowing they will have their own powwow one night while I'm at work and reach some sort of accord. 

Was it something I said?... Cheerleaders get no respect

I am always wanting to post here, but life as a working mom with MS is ruled by interruptions, too many tasks and not enough time! And, quite possibly, time-sucking diversions like Facebook (ha!).

However, I did just post this response (below) in a closed group in FB to a fellow MSer regarding the challenge of wanting to be inspiring to others and still being taken down for it in the forums. This MSer is one who runs marathons and who is always actively evangelizing the idea of staying active as much as possible.

And it's great advice, though not always well received.

This happens a lot, actually: people write "positive thinking" comments or posts on their timelines (hmmm, guilty as charged!) and the trolls the disenfranchised and unhappy come out in force to let you know just how pointless it is to be hopeful.

Here's what I had to say about that, with identifiers removed for privacy. Sometimes I spend my blogging eloquence on posts like this and then I think, dag, I could use that at my blog. So here goes. This is slightly revised because, dagnabit, the editor in me can't help it.

Enjoy your day, however it comes to you!

-----------

[Dear X:]

Being a cheerleader and encouraging more activity should not be something you apologize for. "Do what you can" is a great approach and you shouldn't be criticized for encouraging that simply because you are more able-bodied.

There are definitely days where I wish my invisible symptoms were more obvious (as in the presence of a wheelchair) just so I could drive home the message that, listen, people, I *do* have limitations and I'm *not* faking it. This is very hard to get across to people who only see a physically functional person and not the terribly fatigued, brain-fogged, migraine-riddled and randomly incontinent person I am. I am a writer and work in medicine, and my intellect constitutes a huge part of my identity; for me, losing bits and pieces of my intellectual abilities can be terribly demoralizing in much the same way losing one's ability to walk can be.

I think many times there are peers among us who are depressed and no amount of positive thinking is going to reach them, bless their hearts. Depression is a recurring theme in my family and I have been there, so I recognize its many faces. These MSers might lash out or express their own kind of judgmentalism by accusing others of "having it easy" or being "holier than thou" or complaining "easy for you to say!". Part of that comes from being visibly afflicted, which in our culture means they are more likely going to be treated differently ("put inside a box" is a great term: the same box with other weak, broken, ineffectual people who have less power in the world). That means their identity has been reduced by others to the visible symptoms of their disease and they cease to be the whole person they are even to their most cherished loved ones. Of course, not everyone is this horribly insensitive to the plight of MSers, but many many are. People can be cruel, though I still insist that this is their own soul's blind spot and not something that we, as MSers, should spend any of our very precious energy trying to fix. 

When I am having great days where my energy is 90% or better, my mind is clear, my words come easily, my head is light and unfettered by pounding, nauseating pain, and I am not worried about finding a bathroom in 30 seconds or less (!), I am so very grateful to not be someone that others can "put inside a box." 

For my part, I do yoga (which, as [Y] points out, is wonderfully adaptable to all kinds of ability), hiking and fast walking on rural roads with hills and valleys. I have severe issues with my wrists, so many of the poses I do in yoga (down dog, anybody? side plank?) are very hard to do for me because of the pain and numbness and pressure. The strength is there, but the support is lacking. Still, a good yoga teacher can give you options that work so that you can still get the benefits of the pose, as well as the breathing. Yes, there is pain sometimes, and numbness, and fatigue beyond belief even during slow walks. I remember seeing a bench alongside a park trail and really really really wanted to just lay down and take a nap, in the middle of my walk, because my head was so "thick" and my energy was so low. Who does that? LOL And the whole issue of incontinence is always a problem because I like to hike and walk out in nature where there are no bathrooms! Let's just say, I'm a girl scout now and try not to give myself too much grief if the worst happens. Not my fault! It's the damned MS.

So I just take it one effort at a time (not even one day at a time, because the status of my health seems to change hourly!). On a low energy day, I just laugh and say, Oh well, today is not my day to be 100%!, and on a high energy day, I laugh with joy that I can do everything I want to do. Most days I float between these realities and so I just laugh (unless I have a migraine, then I hibernate).  

[X], I agree with you that for many of us, the motivation is there, to do what we can as long as we still can. There is no guarantee we will be in this same able-bodied place in the future, and that is perhaps MS's biggest curse of all, this uncertainty we must live with while trying to get on with our lives. And what we are doing when we "do what we can" is making a choice: to maximize our health, to live without regrets, to be an active soldier in the war waging inside each of us, to be a whole person. But it's so very hard to care and to make the effort when our abilities don't match our will ("the spirit is willing but the flesh is weak"), so I imagine any pushback you get from those who think you are being Pollyanna about MS because your gift of athleticism is apparent and you are making the most of it is due mostly to the fatigue that comes with their struggle to do even the most simple tasks. And boy that can be very depressing and can color every action one takes without a strong mind and heart to fight back.


So try not to take it too personally if others aren't as gung ho to your message. We are all bringing different levels of ability and emotional energy to the discussion and sometimes it means others will want to dowse your flame because of it. As Kent M. Keith says in his Paradoxical Commandments, " Do it anyway." For those who are receptive or who need hope, your words are not lost, ever.


[P.S. By the way, I have Keith's PC posted on my wall as a poster... words to live by, no matter how able you are!]