Under the Americans with Disabilities Act (ADA), a disability is defined in one of three ways.
If the person has a physical or mental condition that substantially limits a major daily life activity.
If the person has a history of a disability (such as cancer that is in remission).
If the person is believed to have a physical or mental impairment that is long term and debilitating (even if he does not have such an impairment).
Interstitial Cystitis is chronic and debilitating, in the sense that with certainty this is a disability protected by the Americans witth Disabilities Act. Under this act, you are able to request that adjustments are made to relieve some of the disadvantage that this condition causes, in comparison to those without the condition. If you do not feel these steps are being taken, you are able to bring your complaint further. Follow the procedures in place where possible and if the progress is not as you feel settled with, you are able to ask for details of the authority to raise this further to.
You may find it useful to take a look on the American Gov website for the ADA legalities. It highlights some great points.
Some people or organisations like employers, shops, local authorities, travel companies and schools must take positive steps to remove the barriers you face because of your disability. This is to ensure you receive the same services, as far as this is possible, as someone who's not disabled. The Americans with Disabilities act confirms changes or adjustments should be made to ensure you can access the following things if you’re disabled:
Employment - ask your employer for adjustments
Housing - ask for adjustments in your home
Goods and services like shops, banks, cinemas, hospitals, council offices, leisure centers
Associations and private clubs like the Scouts and Guides, private golf clubs and working men clubs.
For Interstitial Cystitis, there are accommodations that may be reasonable to request in certain circumstances, such as within employment. Here are some examples of possible suggestions for the individual difficulties you may face with this condition - Please remember, they are limitless. It is down to you and the organisation to work together to find solutions and the law protects you from wrongdoing in these times.
Symptoms of IC:
Nocturia (Needing a loo throughout the night)
Pelvic and Lower Abdomen Pain
Urethral and Perennial Pain
Tiredness and Fatigue
Irritable Bowel Syndrome
Immune difficulties (Prone to catching viral or bacterial illnesses)
Depression and Anxiety (Associated with living in chronic pain/ difficulty)
Continuous or Intermittent 'flare ups' (Times of intensified symptoms)
Below are further suggestions to possible accommodations to request:
Frequency - It is common to go to the loo with IC, up to every 10 minutes in a flare. That can range from 10 - 100 times a day, sometimes being sat there for hours. You may ask for flexibility around toilet breaks and time away from your desk, in consideration to your condition as a reasonable adjustment.
Urgency & Incontinence - This is unexpected and with IC, you'll be familiar with the fact that you don't usually get much warning before the 'need' takes over. You may request to make a plan for emergencies, clarifying just what you would be requiring and how you could work with the organisation (i.e employer). Another suggestion is flexibility for using the toilet or ability to change clothing if required.
Nocturia and Tiredness - This can really impact your ability to get a good nights sleep and if you become too drained, you may put yourself or others at risk or be unable to maintain your strength throughout the day. You may wish to ask for adjustments to be considered with regards to the official lateness, absence or cancellation procedures and terms. You may also request alternative adjustments such as flexible working hours, part time working or working from home. These suggestions may not be suitable, but there is a responsibility for both sides to find a mutually agreeable solution.
Chronic Pain - This aspect is one of the most dampening and draining of all. As a sufferer of a chronic condition, you tend to sacrifice your cognition for the sake of pain relief. Pain can vary among IC patients and is impacted by associated conditions also. You are well within your rights to request: Office seating arrangements that support the parts of your posture or body which ache; Absence policy adjustments to take your disability into consideration; Amendments to certain things that must give consideration to the effects of medicine (i.e changing your duties during a time of strong painkiller use or to the location of work)
You can request policy Changes - If the company in question has a policy or rule that directly or indirectly effects your condition or is effected by it, raise this concern. You may be able to come to an alternative arrangement or reasonable adjustment. For example; if your employer has a policy to raise a warning at a certain number of absences, you may wish to ask to discount those related to Interstitial Cystitis.
We may spend a lot of time feeling low and hopeless, ignored, belittled and all of the feelings that invisible illness causes. Just because people ignore your truth, does not mean you should stop telling it. Keep on to the just part of you, the part that sees past the judgement and hopes for understanding instead. Keep going and keep strong.