I talk a lot about being responsible for one’s own health, from interviewing doctors to maintaining proper nutrition, and today I wish to broach the topic again by discussing the importance of being a responsible “sicko” (as I call myself). This can be especially important for someone who is dealing with an invisible chronic illness (ICI), in other words, someone who doesn’t look sick.

As discussed in earlier articles nearly one in two American’s now suffers from one or more ICIs and possibly requires some sort of special service or need while going about their daily life. Special services can be things that seem simple enough, such as requiring refrigeration for certain medications or the need to sit down at specific intervals. Some have even tougher requirements, such as dealing with Multiple Chemical Sensitivity (MCS) who needs to ensure that they don’t come into contact with possible allergens that could trigger migraines, rashes or worse.

Since the American with Disabilities Act, which is celebrating its 20th anniversary this year, was implemented great strides have been made to make public areas more accessible to those with limited mobility, public telephones need to be hearing aid compatible and elevators are required to have Braille floor designations.

Unfortunately some conditions, such as the aforementioned MCS, cannot be worked around in the same way and while many public places know the importance of having enough seating and having water fountains available there is no guarantee of finding these things in any particular place.

This is where personal responsibility comes in. I can’t tell you how many times I’ve heard a fellow chronic pain patient complain because they didn’t have a seat at an event or they ran out of water while touring some out of the way place. Every time I do, I smile in sympathy and try to gently point out that a little forethought on their part could have saved them a lot of pain.

Before heading out to tackle your next adventure take a few minutes to think about what you might encounter. For instance, if you’re going to your grandson’s first Little League game at the old town park, keep in mind that any seating available is likely to be bleachers – a notoriously uncomfortable hallmark of sporting events. Additionally, if they do have a water fountain, Murphy’s Law states that said fountain will be on the opposite side of the event from where you are – so find a water bottle you like and keep it with you, if you run out you only have to venture to the fountain once for a refill, or better yet, send a child for you – as they are fast, full of energy and usually like to help.

This concept applies to food as well. Many chronically ill individuals have specific dietary requirements and there is no guarantee that you will always be able to find what you need when you need it. I strongly recommend keeping non-perishable snacks in your car, as well as in your desk, backpack or purse, anywhere that you can get too easily in the course of your normal routine.

Certain special occasions, of course, revolve around food, including holidays, birthdays, weddings, and award dinners. If you maintain a specialized diet or have allergies or intolerances make sure to touch base with whoever will be preparing the food served. Most places now automatically serve vegetarian meals; however Kosher, vegan, gluten-free or dairy free meals are not often on the menu.

While it may be considered tacky in the old school book of manners to bring your own food to such an event it can also be the most healthful option if you cannot control what will be served, or are required to eat at a specific time, such as every two hours. I have noticed that few special occasion meals happen at standard meal-times and most of them end up being served later than originally planned, especially in places where speeches, alcohol or both are part of the itinerary.

Not all outings are short of course and it’s the longer ones you really have to plan for. If you’re going to be staying in a hotel and are, say, highly sensitive to bleach like I am, ask to speak to a manager when you make your reservation. Tell them exactly what your needs are, such as; please do not use bleach products when cleaning the bathroom. There are a few places that will not accommodate you but many will, especially smaller chains, private hotels or bed and breakfasts. Some may require an additional fee, which is usually minimal and in my mind, well worth it.

If you have a hard time walking for more than a few minutes, places like airports, amusement parks and museums usually have motorized carts or wheelchairs for their patrons however, chances are they will only have a few on hand. Calling ahead will also work in your favor here. Let the facility know when you are coming, how many will be in your party and specify that you would like a wheelchair reserved for your use. These places also often have public affairs liaisons that can assist you if you are hearing or visually impaired (yes, these are considered more to be invisible disabilities than chronic illnesses, but I believe the invisible part is link enough).

This brings us nicely to the topic of service animals. Over the last twenty years a lot of recognition has been given to aid dogs for the deaf or blind and most people no longer think twice if they see a blind patron with a dog in the grocery store. However, many do not yet realize that there are also aid dogs for those with epilepsy, PTSD, chronic pain and other ICIs.

If you are among those lucky enough to have a canine-aid it is a good idea to call ahead if you’re going to be taking your aid dog with you to public places. According to the ADA at www.ada.gov “The ADA defines a service animal as any guide dog, signal dog, or other animal individually trained to provide assistance to an individual with a disability. If they meet this definition, animals are considered service animals under the ADA regardless of whether they have been licensed or certified by a state or local government.”

However, not all dogs are outfitted with special collars or vests, which can cause confusion for business owners who are not expecting to see, for example, a service dog who senses seizures. A quick call or email to the place you’re going could save time and make your experience more enjoyable since you won’t get held up explaining about, or trying to prove, your dog is a service dog. Sadly I have seen business owners, unaware of the law, argue with or refuse service to people with aid dogs in tow. I feel this step is especially important if you are planning to go somewhere that prepares and serves food.

When traveling it’s a good idea to write down any medications, warnings or special instructions and keep a copy in your purse, pocket or luggage, additionally if traveling with friends, give a copy to one of them as well. This will help to ensure that in case of an emergency those around you will know what to do and know how to carry out your wishes.

I have been known to pass out for no apparent reason other than sheer fatigue or from a migraine. When staying with friends I tell them, “If I’m breathing normally and not bleeding give me a few minutes and try to revive me before calling an ambulance”. When at hotels I leave a set of medical instructions, including emergency contact information, at the front desk.

The last thing I want to touch on is courtesy, as in, we need to remember to be courteous and patient with those who don’t understand what it’s like to have an ICI. Sure, we all run into folks who simply don’t care, will never understand and don’t have a kind word to say. On the other hand there are some truly kind people in the world who are willing to learn about guide dogs, portable nebulizers, and artificial limbs if we give them half a chance.

I get very frustrated with people, who don’t pay attention to where they put their canes, or those who turn hearing aids way down then scream at me or into their cell phones because they cannot hear themselves and yes, even with folks in wheelchairs who will block a path with no regard to who might need to move around them – including others in wheelchairs or with canes, which happened to me while recovering from foot surgery and in a wheelchair.

It can be hard to deal with the comments “oh, you can walk but you choose the wheelchair” “Have you tried the extra strength OTC pain reliever” “My friend’s friend had FMS but she cured her with ground up ‘herb de jour’, why don’t you do that”. I will admit I have made my fair share of snippy replies “yes, I can walk but the chair matched my outfit” “Ah yes, I’m sure the OTC will work where the morphine failed” but I learned to recognize these folks were mostly trying to help or are simply ignorant on the subject and spreading awareness through kindness is far better P.R for those with ICIs than snide remarks and eye rolling.

So the next time you’re out for coffee, tuck your cane away so the healthy folks don’t trip over it. If you think you’ll need one call ahead to reserve your wheels so you’re not the woman screaming about civil rights to the mall guard because all 20 wheel chairs had already been taken. Spread positive awareness of service animals by taking time to introduce them to the owners or operators of places you visit.

Lastly, if you can, smile the next time someone makes a mundane suggestion you’ve heard 212 times before and kindly explain why whatever it is doesn’t or won’t work for your ICI, thank them for caring, and move on cheerfully knowing that you are, in fact, a responsible sicko.