Interstitial Cystitis Network : Patient Handbook : Working with IC

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Created: Sept. 20, 1999
Jill Osborne

You are here: IC Network > Patient Handbook > Working with IC

Working with IC can be a challenge for some IC patients. Commuting can be difficult and very irritating to an bladder. Sitting for long periods of time can be equally uncomfortable. And, for others, using the restroom frequently throughout the day creates embarrassment on the part of the employee and worry from the employers standpoint. But, it can be! Thousands of IC patients continue to work and enjoy their jobs, though they have made some adjustments to make work easier. Here are some ideas.

An Approach to Daily Working Life

IC patients who work successfully follow several important rules. Remember, having IC is like having a broken leg. It will take some time to heal and recover.

Pace yourself. This is NOT the time to run a marathon or work eighty hours a week. Your body needs time to recover.

Focus on healing. Try to take a night class in stress management.

Use your breaks to practice relaxation. A guided visualization audio tape is a great relaxer.

For business trips, plan your travel in gradual steps. Don't forget to bring your IC tool kit to deal with flares.

Wear loose, comfortable clothes. Ladies prefer thigh highs or stockings, rather than pantyhose.

Try to sleep as much as you. You need your rest

If you are a supervisor, practice delegation!

Minimize your computer time. When you're home, focus on recreational, non stressful activities with your family.

Reward yourself frequently!

The Coffee Dilemma

If you are like most working adults, the thought of beginning the morning without coffee is impossible, unimaginable and brings an instant "No" in response. Coffee has become a comforting habit. It helps us wake up in the morning and is a way to socialize with others during breaks at work. Drinking coffee (or tea) after a meal is a beloved social ritual for many. Yet, for an IC patient, these rituals are no longer helpful. Coffee, lattes, cappucinos, teas, herbal teas and even chai tea, cause bladder irritation for the great majority of IC patients.

Coffee and tea contain two problematic ingredients, acid and caffeine. IC patients can be sensitive to one, or the other, or both. So, just as in the IC diet, patients may need to experiment. Bev Laumanns book "A Taste of the Good Life" offers an excellent discussion of coffee, including acidity and decaffeination. One method the author recommends to reduce acidity comes from Eliot Jordan of Peet's Coffee and Tea, who suggests cold brewing coffee beans over night to make a concentrate. This can then be combined with hot water to make hot coffee. Also, keep your coffee fresh. Remember that coffee left in the coffee maker is the strongest and potentially most irritating.

Bev states "One way to insure that you get the least-caffeinated and least-acidic cup of coffee possible is to buy roasted beans and grind them yourself. Another option is to mail-order your beans..." She recommends three mail order companies: Diedrich.com (1-800-354-5282), Peet's Coffee and Tea (1-800-999-2132), and The Coffee Bean and Tea Leaf (1-800-832-5323).

What are the alternatives? Some patients prefer to try Kava Kava, a low acid coffee. Others prefer grain based hot drinks, like Roma, Postum, Pero or Cafix.For IC patients who are extra sensitive or in flares, try hot water and honey. I've ordered this in several countries (hot tea, with the bag on the side or just hot water with honey) and at every restaurant and had no problems. It's warm, comforting, smells good and is perfectly safe for my IC bladder.

To Commute or Not Commute

There is no doubt that driving can be very uncomfortable for an IC patient, particularly long distances each day. The vibration of the car or train can set up the foundation for a very uncomfortable work day.

Consider using an IC chair cushion during the commutes. With a groove down the middle which keeps pressure off the crotch and sensitive urethra, sitting on buses, in cars and in your office chair will be much less traumatic. Read more about these in the ICN Marketplace.
Some IC patients relocate closer to work to reduce their commute time.
Some IC patients negotiate a telecommuting arrangement for two or three days a week.

If you are commuting, leave thirty minutes early (or longer) to accommodate stopping at restrooms along the way. Usually, the best bathroom stops can be found at:

McDonalds, Burger King or any fast food restaurant.
Coffee Houses
Department Stores
& the dreaded, but necessary, gas station bathroom.

Consider carrying a urinal in the car or, at least some thick towels and plastic garbage bags so that, if you get stuck in a traffic jam on the freeway, you can (in a pinch) pee into the towel and then store it in the plastic bags. A clever trick is to fold a small hand towel into fourths, tuck it on top of a plastic bag, and then place it between your legs. That way, any residual liquid will be stopped by the plastic.. and you can do it behind the steering wheel. It's very easy! Don't forget a large towel or sheet to cover your self during those more exposed moments.

Scheduling Doctor's Visits

If you are a newly diagnosed patient, one of the quick things that we learn is that the best time to have a doctors appointment is the very end of the day or, better yet, a Friday afternoon. This way, if you're going to have a procedure scheduled (i.e. like a urodynamics test or DMSO instillation), you can go directly home, rest (or soak in the tub). In addition, you'll have a night or weekend to recover and feel better.

The worst time to schedule an appointment is in the early morning. You may be uncomfortable after the visit and it may be difficult to focus on your work at hand. But, if it's an emergency, go whenever you can.

Learn Your Rights

Carefully review your personnel policies for any statements regarding disability. Most employers must comply with the American's with Disabilities Act. As result, employers will have provisions in their policies for requesting accomodation for your disability.

Restroom Access on the Job

Some IC patients feel awkward using the restroom frequently. Others choose to hold it until they get unnecessarily uncomfortable (and in pain). Use the restroom when you need to.

If you are in a meeting, don't be embarassed about standing up and saying "excuse me." Every one does at one in time, and you have the right to use the restroom.

Disclosing Your Disability?

This is a delicate question because you simply can't predict the response of some employers. In my case, as an employee of the Girl Scouts (an organization that I had thought would be progressive), I was downsized out of my job just weeks after going out on disability leave to have treatment and surgery. The employer eliminated only those employees who were disabled, thus leading to an numerous charges of disability discrimination. (I did sue and, five years later, the case settled just weeks before trial).

Did the disability play apart in my downsizing? Yes, I believe that it did. There was no other explanation for the termination of JUST the organizations disabled employees. In subsequent evidence, we also discovered that despite their claims of financial stress, the rest of the staff got raises at the same time that we were downsized, thus demonstrating that the organization wasn't as financially stressed as they indicated.

Before you disclose that you are disabled, you'll want to do several things:

Review your personnel polices about any organizational policies that relate to disability leave, sick leave and the ADA.
If you work for a larger organization, ask who your ADA representative is.
Check the posters in your lunchroom and look for info on the ADA. Call the numbers listed for the federal Department of Justice EEOC and any State agencies that enforce the laws in your part of the country.
Cruise the web for ADA information
Talk with an attorney (hopefully a family friend or relative) about the ramifications of the disclosure. In hindsight, I would have given my employer many less details than I did. They just didn't have the right to know the details.

Remember, the essence of the ADA is that you CAN perform the essential functions of your job, but that you can ask for "reasonable accommodation" to make your job easier. An example could be a "modified work schedule," or having an office closer to the restroom.. or just increased restroom access. Also, under the ADA, employers have no right to ask you if you are disabled during the hiring process. What they can ask is "Can you perform the essential functions of this job?" If, after the interviews, you are offered a position and accept the position, you may then request "reasonable accommodation" under the American's with Disabilities Act.

Facing the Decision to Quit

Because they are unaware of their rights as an employee, some IC patients have felt that they had no choice but to quit. Others have been asked to quit by their supervisors, in an attempt to mask it as a "voluntary" resignation. Remember, if you voluntarily leave, you may not be able to receive unemployment benefits.

Before you take that leap of submitting your letter of resignation:

Talk it over with your physician and ask what he thinks of your physical condition. Remember, you'll need a physician to certify that you are disabled and unable to work if you apply for disability benefits.
Talk it over with your family and explore your various options about family income, etc. Take an honest, clear look at your finances.
Consider taking a period of leave without pay first, which will hold your job for a period of time. Perhaps two weeks (or four weeks) off will give your body a chance to rest.
Consider a part time work schedule. Perhaps a conversion from full to part time work for a period of time would give your body a chance to rest AND retain your job for a period of time.
If your employer persists in asking for your resignation, verify the ramifications of that with the unemployment office in your state. It may be in your best financial interest to have them terminate you, rather than leaving voluntarily.

If You Do Leave

As an IC patient, I worked full time for about a year until my IC pain became unmanageable. (That was before anyone told me not to drink cranberry juice, which I had been drinking by the gallon and getting worse by the day). I then requested a week of sick leave, which was followed by a request for leave without pay due to disability for six weeks. I can honestly say that I needed that time, and perhaps a bit more, before I would have been able to return to work full time.

If you are laid off and carry the anger that comes with a termination, try to remember that you need to focus your time on healing. This may have been the opportunity you needed to move to a better job that you liked more. If there was a mistake I made in my lawsuit, it was wasting five years of my life to "make a point." Yes, I was angry and outraged that I was terminated. I was worried that I wouldn't have health benefits. On the otherhand, they didn't deserve any more of my time or money. Lawsuits consume both endlessly. If I could do it all over again, I would walk away and start my life anew.

Don't forget to verify the status of your health insurance. You may be entitled to cobra benefits for 18 months. If you are, take them. Sometimes, the health insurance carrier will automatically convert you to an individual employee.

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