The many emotions of IC
Undoubtedly the development and subsequent coming to terms with, and living with a medical condition of any type can greatly affect how we feel. IC is no different, in fact its very nature may cause you to experience a wider array of emotions and responses than if you had developed other types of health problems. A substantial part of the reason for that being that IC plays into one of the most basic of all human actions; going to the bathroom. Another is the continual pain and discomfort you have as a result of IC.
The symptoms of IC are a little like the sections in an orchestra, one or two might be absent but you still know that it’s an orchestra playing not just a flute and a violin. The most common symptoms of IC are urinary frequency, urgency, pain in the bladder/pelvis/abdomen, night voiding (waking up to go pee), pain with sexual intercourse (clinically known as dysuria) – when IC is present with out vulvodynia, the pain may occur only upon penetration or weight on the lower abdomen, pain at some point in the actual process of voiding and a bizarre feeling/sensation that despite how often you may be voiding, your bladder never really feels empty. Add to these symptoms many others, such as a sensitivity or “inability to handle” to many everyday foods and beverages, bloating, lower back pain, exhaustion/fatigue and pain which (commonly) becomes chronic, and even the most resilient person among us is bound to experience a gambit of emotions.
I would be highly sceptical of anyone who says that IC has not caused them some level of stress, as so many of the aspects of IC are very stressful! Chronic illness, broken sleep, interference with your normal routine, medical visits, medication, the affects of IC on your daily life (family, friends, work), driving/travelling with IC, eating for (around) a medical condition and IC’s impact on your sex life are but a handful of reasons why your stress levels may become elevated and your emotional responses charged.
It’s incredibly important to realize that each and every emotion that you feel is legitimate; there are no right and wrong emotions. How we truly feel can rarely be curved; only our responses to these emotions can be varied and unique. Where one person (seemingly) quickly takes everything in stride and aims to be as pro-active as possible in their health, another may feel the desire to isolate themselves not only from the world, but also from their “normal” everyday lives. Another may become depressed and another denies that anything is actually wrong with them at all.
To begin to delve into why some people react one way and others another is truly a book or several books (let alone articles) unto themselves. Factors can include our current mental health (and state of mind) when a negative event occurs (as in the development and or diagnosis of IC), our emotional state, our stress level, work, money, relationships, and past history of experiencing and dealing with difficult/painful/challenging situations and occurrences.
The act alone of having to void 20, 40, 60+ times a day is an alteration from what we are used to! Even if voiding is pain-free for you, the interruption of your daily life is annoying at best and down right hair-pullingly frustrating and highly exhausting at the other end of the spectrum. Things like always wondering about the availability of washrooms, interrupting your daily routine to go to the bathroom, perhaps shying away from or being unable to partake in social situations and many other aspects tie in to the seemingly endless bathroom trips.
It may seem as if IC flips your life upside down. It will to some degree impact almost all aspects of your existence. Many find that maintaining a sex-life that they are happy and satisfied with is no longer possible. As their symptoms may be too severe to engage in lovemaking, or the act itself may cause pain that is too intense to justify having sex. As well as the obvious affects that this has on the ICer, they will no doubt be concerned or even worried/scared about the feelings of their partner. It is vital that you keep the channels of communication open and express how you feel and how you think (presume) your partner/spouse feels about the situation. Silence will not likely help either of you!
Changing the way you eat is rarely easy, and overhauling your diet to work with your IC is no different. Some people may find that the “comfort foods” they once turned to are no longer there (chocolate, alcohol, coffee, etc) if they have vowed to diligently follow an IC diet. Whether these foods were more like vices than momentary “comfort” or stress relief will vary widely from person to person, but anyway you look at it, adapting your diet takes a fare bit of getting used. You may feel that every food is “against you” or that the act of grocery shopping, eating out, or eating in social situations has become very stressful and disheartening. You may feel (some what justifiably) that the only food that is “safe” is that which you have prepared with your own hands.
Continual trips to the doctors, dealing with doctors/health care workers, therapy, medication, IC complications, the overlapping of IC with other medical problems, the realization that you have a chronic condition, fear of losing your job/partner/etc as a result of your health. As many other reasons as there are IC patients exist that will cause us to have emotional responses to our IC.
Of the vast number of emotions and feelings you may experience these are some of the most common:
-Fear: The unknown and new may cause panic (flight or fight), horror and unavoidable fear. If your symptoms are progressively getting worse or if you are having trouble getting a diagnosis/finding a good doctor (urologist)/getting treatment that helps you may experience a very legitimate level of fear. You may fear (prior to diagnosis) that you are dying, have cancer, are being punished for something you did (which is of course nonsense), or that you have gone “crazy”. All these things are incorrect, but until you have been reassured that they are not true, you may feel trapped by the idea that one or more of them is accurate.
One the one hand fear is positive as it can help us to seek out solutions to our problems or create in us new courage, but it can also hold us back and put us at risk of not getting the help we may need. For example if you are still undiagnosed and you have seen six doctors in five months none of whom have helped you, and you are fearing having keep the process going, you may opt to stop trying to find a supportive doctor, thereby inhibiting your health rather than helping it. The brain is (unintentionally) doing the body more damage than good.
Fear is a very common IC emotion, one that we all experience. When you develop IC you may feel as though you are the only one on the planet with these sorts of symptoms and concerns. Negative responses from doctors you turn to for help might appear to drill that notion further home, thusly increasing the fear that you might be alone, when in truth millions of people all over the world have IC. It (fear) is often long term as well, and may have adverse consequences on your life.
You may find that talking about your fears, especially with other ICers or people with chronic illnesses (conditions) can really be beneficial.
-Anger: it’s very normal to feel angry when you become ill. Hey, after all you had a healthy, happy life, why the heck did this happen to you (me)? Almost anyone would be angry if they were suddenly voiding forty times a day and feeling intense pain! Anger over your health, anger towards doctors/the medical community, anger that you may be unable to do or eat certain things you once could, anger that you may feel helpless or no longer in control of your life and anger towards your body itself are all very real and valid emotional responses.
It is important to try and not let anger – which can be a wonderful motivational tool – become blind rage, as that will only cause you further stress and potentially hurt your relationships with other people and change your personality in negative ways. Instead of saying why me? It is better to come to terms with the fact that you have IC and look for ways to help make your life as enjoyable as possible. This will include everything from experimenting with IC treatments to finding ways to relax and unwind. I realize this is easier said than done, but it is possible.
If anger is overwhelming you, it may be helpful to ask for help. Many support groups of this nature exist, and the mental health offices in any city can point you towards groups or people you can openly talk to about your anger.
-Shame: The feeling of shame is like walking around with a blanket over your head, it prevents you from seeing the way life really looks. There is nothing to feel ashamed about IC! It is in no way your fault, and you are not to blame for how you feel or the symptoms/emotions that IC causes you to have.
Reasons you may feel shame include continually going to the bathroom, feeling like an invalid, inability to perform as you would like to sexually, having to admit to people in some circumstances that you have IC, having a chronic (serious/long term) illness and shame that you are no longer “normal”.
The actions and responses of other people may also cause you to experience shame, as saying the words “I can’t” can be damaging to yourself esteem, no matter how justified you are in saying them.
You may feel unworthy or unwanted as a result of IC, but this is simply your perception, as you are the same person you always were you just “got sick”. It’s a physical transformation of your body; if your hair suddenly turned purple, would you be any less of a person? No! Of course not, yet many ICers feel a deeply engrained level of fear and shame (and guilt) regarding their health.
You have to remember at all times that you are exactly the same person that you always were and that shame is not worth your time because IC is not shameful. It is a medical condition just like arthritis, asthma, IBS or any other health problem. You did not bring this upon yourself and should not feel ashamed about how IC makes you behave and feel, or the life changes (adaptations) you create to help make life (and IC) more bearable and enjoyable for yourself.
-A sense of loss (longing for the past/pre-IC days): You may feel as though something has been robbed from you, or that you have inexplicably lost something you once possessed. The truth is we really don’t posses our health, and we can only do so much to control it.
It is normal to feel loss any time that a traumatic event occurs, especially one that will continue to be a part of your daily life. While it is true that you may have lost certain abilities or aspects of your life, such as (for some ICers) being able to ride a bike, go four hours with out voiding, eat an orange, or even hold down a full time job (or work at all)- you have not lost your integrity, personality, and intelligence.
Realizing that you have “lost” some things can help you to make the best of those that remain; you may even find that you gain new aspects of your life as a result of IC. For example, had I not gotten IC, moved provinces to get the best care I could at the time and set a long chin of events into motion, I am all but convinced that I would never have meet my wonderful husband! How’s that for motivation when it comes to getting over loss!
Other key emotions include sadness, melancholy, regret, and injustice. As well there can be positive emotions such as happiness (that you have a diagnosis, that you are not actually dying of a mysterious illness, that you are not alone, that there are treatment options available) and contentment. Contentment may come in the form of living your life with IC but not letting it control you entirely, or by reading/researching about IC, talking to other ICers, and taking an active role in your health.
It’s important to point out the depression is not really an emotion but rather an affect of how you feel. If your emotions were two sticks rubbing together than depression may form as the resulting flame. While we all feel blue, sad, upset, low and so on from time to time, if you are continually feeling these things or they are very intense you may want to speak to your doctor about them, as it may be depression in the clinical sense. There is nothing to feel ashamed about depression. It is estimated that as many as 25% of the population will experience some form of real depression at some point in their lives. The affects of IC can cause people to develop depression, and it is important to ask yourself periodically if how you are feeling feels “right to you”. By that I mean do you feel like your usual self. Are you withdrawn, secluded, grey, upset, weepy, decreased or increased appetite, having a loss of libido, or inability to control your emotional responses? All these things could be signs of depression or they could be the results of IC itself. But that can become a very thin line, and so it is wise to not let depression-like emotions continue unchecked for too long. Is truly extreme cases it has been reported that people with IC have committed suicide, and any suicidal thoughts or tendencies you may have need to be dealt with immediately. No matter how rough life seems IC is not worth killing yourself over!
Just as depression is a negative response to emotions, the ability to maintain hope is a positive one. It has been clinically shown that keeping a realistic level of hope afloat through out any situation, especially an adverse one can actually benefit your health. People who claim to be hopeful that they will recover have in some cases actually improved faster or better than those who are not optimistic and hopeful. Cliché as it sounds, it is a wonderful idea to keep hope alive in your heart and mind like a candle burning in a window. That flicker of hope may be all the motivation you need to help get your through the day or a rough patch. As well it is great to hope and have faith that a cure for IC will one day be found.
No matter what you feel discussing your emotions is always a good idea, be it with other ICers, family, friends, your doctors or people who specialize in counselling. You may find it beneficial to express your emotions through an outlet such as writing, drawing, painting, playing music, getting involved with support groups, or sharing your IC story.
No matter how you feel it is important to know that all other ICers are sharing these emotions, and that every feeling you experience is valid.