Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?

I am thrilled to announce that I recently had this blog post, “Does Michaele Salahi’s admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis?” ran over at the Huffington Post. Please be sure to visit and leave a comment to help us increase awareness of invisible illness issues.

Lisa Copen
Invisible Illness Week Founder

Related articles

• NOT WELL: Salahi reveals MS diagnosis (politico.com)
• Lisa Copen: Does “Housewife” Michaele Salahi’s Confession of MS Help or Hinder Illness Awareness Issues? (huffingtonpost.com)
• Michaele Salahi Has Multiple Sclerosis (thehollywoodgossip.com)

Popularity: 9% [?]

Savoring the Privilege of Walking

By Ann Pietrangelo

Do you recognize disability when you see it?

Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.

It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.

When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.

We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.

If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.

It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.

Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.

While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.

If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.

Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?

That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.

I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.

If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.

Savor the privilege of walking.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

This was originally posted on Care2.com and has been reprinted with the author’s permission. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo

Related articles

• Ever Considered Leaving a NICE Note for Some Parking in the Handicapped Spot? (invisibleillnessweek.com)
• Parking officers blasted for using disabled spot (thestar.com)
• Just Imagine. . . Trying to Explain Daily Life to a Healthy Person (invisibleillnessweek.com)

Popularity: 3% [?]

“What do you do?” Explaining About Your Invisible Illness and Career or Lack of It (Or Do You Need to?)

This discussion comes up every time someone asks you “What do you do” or every time a person with invisible illness describes his or her life.

The conversation often becomes weird and strained, but that’s to be expected, given that the person’s real illness is not being recognized.

For example, imagine a cancer patient if cancer were not recognized as a “real disease” and people kept asking why the person had lost his or her hair and was falling behind at work. Imagine someone with type 1 diabetes who was told they just needed to drink less water and they would be fine.

Injustices of this sort happen every day to people with invisible illness, because as in these hypothetical cases, misunderstanding and invalidation occur when people are unaware of the reality of a disease. However, being straightforward and just saying what comes to mind is not always the way to go, because of a few factors:

• Listeners might have a hard time understanding how much invisible illness can affect a person’s abilities, including mental and emotional abilities. This society seems to think that the body cannot influence the brain; only the brain can influence the body.
• Between psychiatric ideas about psychosomatic illness, “memes” about people who just thought they were sick but they needed to get out more, and propaganda about CFS and fibromyalgia being “yuppie” illnesses that are purely “psychological,” people might be primed to think that invisible illnesses are not “real” diseases.
• There might be communication difficulties. “Fatigue” means different things to different people. “Irritability” can range from snapping at someone to kicking a hole in the door.
• After being in an illness support community, the sick person might incorrectly assume that healthy outsiders are aware of the basic assumptions and knowledge shared by everyone in the illness community.
• Lastly, dynamics with people close to oneself (family, friends, partners) can be intense and fraught. These people might be directly affected by one’s symptoms and inabilities, and you deal with them often so their attitudes toward you will affect you and perhaps your recovery. Thus, it is especially important to communicate effectively with these people, for your well-being and theirs.

-DON’T say “I can’t work because of illness ” when someone in public you don’t know well asks “What do you do?”

This is like a very bad chess move. What are people supposed to say to it, except for “That’s a bummer” or “Explain this to me, since you look fine to me.”

Then the conversation becomes about how your life is depressing or about defending your assertion that you can’t work despite the fact that you look alright.

This conversation will not go well, because people who have not been touched by invisible illness tend to have a hard time understanding that someone could be physically able to get dressed and leave the house on one occasion but not be able to do productive work in a regular job.

-DO have a quick answer for whenever someone asks you “What do you do?”

People don’t really care how you fund your living expenses (or if they do they are weird). Instead, they are probably asking, “Let’s talk about you” or “What type of person are you?” or “What might we have in common?” Unless they are going to ask a lot of details, they don’t even need to know that you don’t make money.

You could spin your life however you want. Some snappy answers:

• I have _(chronic illness)_ and treating it takes a lot of time, and it took me a lot of energy to make it to this _(party/event/outing)_ but I am glad to be seeing some other people and enjoying myself here.
• I was doing great in life with X and Y, but then I got felled by this awful disease and now it’s all I can do to make it out a few times a week like this. But I’m still interested in Z.
• Well, the last time I was able to work I was a _(career)_, but due to unpredictable health I have not been able to work since _(time)_, but I am still interested in _(topic)_.
• Oh, I’m a _(career)_. I have to work (from home/part time) and I can’t take on too much because I have a chronic illness, but I still manage to do something.

-DON’T explain exactly why you can’t work.

The reasons might not make sense to the listener, and if you mention any cognitive or nervous system symptoms, you might make yourself look even weirder (Many people have a hard time believing that illness can affect the brain nervous system, since we tend to think that these things are “us” and not our bodies).

Also, offering specific reasons why you can’t work (hard to leave the house, hard to concentrate) triggers some people into wanting to solve your problem by thinking of creative ways to get around your limitations. For example:

A: I can’t work because I can’t leave the house.

B: But could you work from home?

A: No, I’m too tired and I can’t concentrate.

B: But couldn’t you do a mindless job?

A: No, I don’t know of any such jobs that aren’t scams that I could obtain and hold without being fired.

B: But you’re talking to me now, so you could talk on the phone?

A: Forget it, this is going nowhere.

-DO explain that many tasks which are easier than work are prohibitively hard for you.

When trying to explain your situation to someone who needs to know, like a friend or family member, you might mention if you have a hard time: leaving the house, driving, bathing, cooking, standing up, etc.

This shows the person that you are already pushing yourself in your life as it is. Just because it would take no effort for THEM to live as you are living (not working) doesn’t mean that it does not take substantial effort for YOU to live as you are living (if you are doing any self-care, treatment research, anything around the house, etc.).

Dr. Larry Sharp of Fort Worth, TX uses an excellent fatigue questionnaire for assessing fatigue in his patients. Instead of just asking “How tired are you from 1 to 10″ it asked how often fatigue interferes with doing a variety of activities. It was shocking to see it there on paper how much fatigue was affecting my ability to do very basic activities.

If anyone questions the level of your illness and fatigue, you might make a chart for them showing from 1 to 5 or 1 to 10 how often your symptoms interfere with each of a few dozen daily activities.

-DO explain how you already do many things that are a challenge for you.

Maybe the listener doesn’t realize that you are already pushing yourself quite a lot.

You could mention:

• Merely talking with you right now is a challenge for me and I will need to rest afterward.
• Doing my own treatment research and managing my treatment is more than I think I can do, but I am doing it because no one else can do it for me.
• I don’t feel up to traveling or cooking, but I do them anyway because I have to go to appointments, eat, etc.
• DON’T assume that your life will make sense to other people the way it makes sense to you.

You might have had your chronic illness for years and you might be used to it. But things you see as no big deal might seem awful to someone who is hearing about them for the first time.

Even with family or friends who see you often, don’t assume that they will understand how certain symptoms aren’t a big deal to you OR that certain issues are much worse than they sound.

-DO make it clear that besides the parts you can’t change, your life is alright, and you are handling things well.

Even if you feel sick much of the time, can’t work, miss out on things, and so forth, you still might be handling your situation in a nearly optimal way.

It’s a fallacy to think that if someone’s life is bad, they must be doing something wrong. Sometimes situations are simply hard.

Outsiders might not realize how your efforts are already making your life much better than it could be. You might want to make a comparison: If not for X or Y that I am doing, I might be in a worse situation.

-DON’T participate the power dynamic in which the well person is supposed to give advice to the person with invisible illness.

In the past, if someone asked, “Are you getting out enough?” or “I think you should be doing X,” I would try to defend myself, saying, “I’m already doing something similar to that,” or “You know you’re right, I should do that more.” I took a deferential position, as though they knew what they were talking about and I didn’t. If things were going well for them but not for me, I should listen to their advice, right?

Wrong. It’s a common misconception that well people can and should offer advice to sick people. Being well does not necessarily mean that a person is doing things well in their life; nor does being sick imply that a person is making bad choices. If a person’s life is hard or if they are unhealthy, it does not necessarily mean they are doing anything wrong. Perhaps they were simply unfortunate.

-DO (perhaps) forestall judgment by anticipating it.

If you say early in the encounter, “I know it has to seem to you like I’m not making enough of my life or not getting out enough, but I’m truly doing what’s best for me and the most I can do,” then the listener might give pause before suggesting the very idea you’ve just said is not true.

Sometimes, this will even prompt the listener to relieve your fears that they think badly of you. They might respond, “Of course I don’t think that! I actually think you’re doing a great job and I’m impressed.”

-DO compare your situation favorably to how things used to be or how things would be.

This makes it into a success story: “I had this problem or was in danger of experiencing these bad things, but then I used my ingenuity or was blessed with fortunate circumstances that make my life much better.”

A success story is usually a good piece of conversation (“Oh, that’s wonderful,”) or else a conversation-ender, since the problem is already solved and contained. Either way, portraying your current life as a success story helps you to avoid unwanted advice.

For example:

• I used to have no idea what was wrong with me, but then I got a diagnosis.
• I used to be very isolated by illness, but then I joined support groups and started keeping up with old friends.
• And a good one for closing: I used to feel bad when people thought I should work or get out more, but then I read this article and now I can respond with confidence.”

Andrea Runyan is a writer in Boston, Massachusetts. She studied math and biology at Stanford University, graduating with a Bachelor of Science in Mathematics and at Stanford, she wrote an opinion column for four editions of The Stanford Daily. She is currently writing a book about communicating with friends and family about chronic or invisible illness. See her blog at Andrea Runyan

Related articles by Zemanta

• Being Authentic About Our Illness So God Can Be Glorified (chronicillnesspaindevotionals.wordpress.com)
• Share About Your Life with Illness With Our “30 Things…” Meme (invisibleillnessweek.com)

Popularity: 5% [?]

Is Dementia an Invisible Illness?

I will start by telling you I am not an expert on dementia. All that I know I have learned from the school of hard knocks, but that is enough to turn your blood cold.

Dementia is a catch all word for loss of memory in any way shape or form. The most well know form of dementia is Alzheimer’s. The truly insidious thing about dementia is that is creeps up on a person rather unnoticed. At first it can seem like the normal short term memory loss that goes along with aging.

If you consider it, no person wants to lose their ability to think and function normally. Most people with dementia hide it, and that is not as difficult as it may sound. Like a person who does not know how to read, they learn ways of skirting the fact that they are confused. A person can easily hide the signs of dementia for years before it progresses far enough to be a problem for them.

Some of the signs of dementia are: asking the same question over and over, or not remembering what was said 2 minutes ago. People lose the ability to remember simple things like when to take pills, or what their pills are for. They may become careless and do things like leave the stove on, or water running.

What they don’t lose is their ability to reason and cope with their situation. They can usually explain away the memory lapses, or become combative. And yes, we all forget some times, just not all the time. By the time dementia is diagnosable, it has progress far beyond normal memory lose.

Dementia is a chronic illness that remains an invisible illness until it has progressed far enough to be diagnosable.

National Invisible Chronic Illness Awareness Week is a boon to everyone. It helps open the eyes of people who do not suffer from such illnesses, and it assists those to who do. These types of sites are great, and we need more of them.

Nancy Montana was a Office Manager at a living and rehabilitation center. She also assists with the care giving of her partners aging parents. She has learned a great deal about the ills of aging. She has a desire to share that with others. You can visit her web site at costplus10store.com

Related articles by Zemanta

• Depression ‘hastens Alzheimer’s in patients with memory problems’ (telegraph.co.uk)
• Alzheimer’s Symptoms May Come in Your 50s (abcnews.go.com)

Popularity: 1% [?]

CFIDS Asks “What Do You Wish People Understood?”

The CFIDS Association of America recently asked in a survey, “What is the one thing you’d like your family/friends to really understand about CFS?”

Unfortunately, we could only find the answers in their Facebook notes, here, but you can read more about the survey results at their web site here.

Thumbs up for CFIDS Assn for creating more awareness.

Related articles by Zemanta

• The CFIDS Association Position On Swine Flu (fightingfatigue.org)
• Teen with ME/CFS Would Rather Have Cancer (fightingfatigue.org)
• 25 Random Things About CFS (Courtesy of CFIDS Association) (fightingfatigue.org)

Popularity: 3% [?]

Coping With Crisis on Top of Chronic, Part 1

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week.

Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next.

If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn’t want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row.

As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all?

Life doesn’t just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise “extras” that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:

1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.

2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.

3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah’s Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.

I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I’m always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!

Join Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss for more on this topic, along with Lisa Copen as they talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Jen says, “Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn’t stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we’ll look forward to chatting with you as you call in your own crisis on top of chronic stories too.”

Popularity: 3% [?]

Be a Guest Blogger!

Are you interested in having a special blog post you’ve written about living with illness (especially an invisible one?) We’d love to consider it! Please submit it here and we will respond as soon as possible. If it’s accepted we will let you know the date it will appear. And yes, it’s okay if it’s been reprinted before. Just let us know when and where.

There are hundreds of thousands of blogs about living with illness and we’d like these posts to represent all invisible illness. So if you or someone in your family lives with anything from leukemia to sensory processing disorder, panic attacks to multiple sclerosis, depression to Myalgic Encephalomyelitis,  alopecia areata to diabetes… we want to hear from you! There is no illness that is too rare.

If your blog is selected, you will also receive an “I was a featured blogger for Invisible Illness Week” button to place on  your web site!

If you are looking for blogging topics visit our Bloggers Unite site where you can also sign up to commit to blogging on your own site for Invisible Illness Week and get the badge.

Please consider adding our logo or button or the badge (on the main page) to you site, Twittering about II Week, whatever you can do to help us spread the word. We want this to be an exciting time where people from all over the world with a variety of illnesses come together for support, encouragement and to create awareness about invisible illness.

Popularity: 3% [?]

Missed Opportunities to Serve Ill with Exercise Options

We just got home from my son’s karate graduation and there was a table display and representative from the new womens local health club. It opened maybe 6 months ago and they completely rebuilt the building (meaning, they have invested a lot of money, especially for these times.) Last week they put up a banner that said “Reduced rates: $49 a month.” I’m sure they owners are hurting financially.

I had actually looked up their web site about 3 months ago to see if they had any kind of classes like Tai Chi. I keep hearing about how this can be a good strength building form of exercise and it’s something anyone can do –even people in who are confined to a wheelchair. My rheumatologist has recommended it and I am desperate for some form of exercise. It’s this or the pool and let’s just say I am not buying a swimming suit right now.

I haven’t done my research on it yet–spiritually–so if anyone has some experience I’d love your comments below.

But anyway, I asked her this morning if they had anything like this that someone with very limited mobility could participate in.

No… they have a form of Tai Chi mixed with yoga, mixed with Pilates and if I couldn’t get down on the floor (which I cannot) then I wouldn’t be able to participate in 90% of the class.

“What a missed opportunity for them!” I told my husband later at breakfast. “If they had a stretching type of class for women with chronic fatigue syndrome, fibromyalgia, rheumatoid arthritis, etc. they could advertise that as a specialty. Women would come from 15 or 20 miles away. If they had an instructor with credentials, they could send out flyers to all the rheumatologists, the Arthritis Foundation, and likely get a lot of referrals.”

I think I will drop by their office later with some Invisible Illness Week brochures and give them my two-cents. I know it may be worth about two-cents, but it financial times like this it’s important to think beyond the box of how we do business, and for those of us with illness, we should remind them just how many people out here really do have chronic conditions.

The woman I spoke with tried to grasp what I was saying and she kindly gave me a 2-week freebie pass and said, “Well, when you are feeling better than come try us out.” I smiled and said, “I haven’t been able to sit down on the floor for over ten years, so I probably won’t be able to participate any time soon.”

But we can do more than just say, “No, thanks,” and turn our back and grumble about how people don’t get it right? We can show them our challenges, our numbers (how many of us there are!) and how by recognizing this fact they may even be able to corner the market on our business before anyone else!

Lisa

Popularity: 3% [?]