Recently a patient came to me and asked me to write something about the hardships of family with regard to her relationship with family members. I thought, what a great idea!
There are so many issues relating to this problem. The first, and most critical I think, is that the person suffering with IC is so often misunderstood. Those who do not suffer from this disease find it difficult to relate to it in such a way that they can truly understand the daily misery that is endured by those who do. So often, especially after many doctors visits and many negative examinations, the IC patient begins to be viewed as a hypochondriac.
When the ICer eats in a different fashion from others or cannot participate in the same activities at the park, or on vacation, or even in a daily routine at home, she is often misunderstood. Family members may often ostracize her and reflect upon her poorly. They may say things that are very hurtful, meaning well but not understanding the difficult burden of pain and discomfort she carries with her at all times. This heaps more shame on the person already devastated by IC. Sometimes this shame and guilt can be much too heavy for one person to bear.
An additional strain occurs at nighttime, when normally a couple retire and have sex. This may be something that is far too uncomfortable for the average person with IC to even contemplate. This only serves to further the guilt that has been accumulating over time for these people, because they feel that they cannot be there fully for their spouses.
Family members want the best for each other, so, naturally, the thought is for the sufferer to take a medication to fix the problem and, if it does not work, to try another one. If someone is sick, the natural thought is that surely health can be restored. Lots of people live with irritable bowel syndrome and they function fairly normally. The presumption then is that it should be the same with an “irritable” bladder. Generally people do not understand how painful or uncomfortable this syndrome is. This is a disease that, unless you have had it, cannot really be understood.
Even morphine does not take the pain away from these poor people. Morphine! So imagine how uncomfortable the condition must be. Think of a time that you were stuck in traffic in the middle of the day, your bladder was full to capacity, and you could not stop anywhere to alleviate yourself. Imagine having to withstand that feeling for one hour past the point that it was already at its peak when sharp, prickly sensations started to set in. Do this and only then you MAY be able to get a tiny glimpse of what some of these people go through every moment of every day of their lives.
Along with this pain and discomfort, there comes the hardship of trying to lead a normal life and do the daily tasks that one has to do to survive. When a family member interjects a comment lacking in compassion, especially one which, may infer that this disease is “in your head”, life becomes just too much. When your sick family member has sought out help from non-conventional medicine, please try to empathize with their choice. Understand that it is not because they have gone against the norm with the intent to rebel, but rather they are struggling to survive. They are looking for hope when all else has failed. They are not resigning themselves to the misfortune that they have been dealt in their life. It actually has taken great strength to continue the fight when everyone insists there is no battle to fight. This disease cultivates strength that most of us will never know. Try to wear your empathy as close to the surface as possible at all times, so that your good intentions can never be misunderstood. It is so important.
Please read this and try to close your eyes and imagine how difficult it would be if you were in the shoes of your sick family member. Be grateful that you were not cursed with this horrendous disease, and be there for your loved one. If you are a spouse, I suggest that you also get help for yourself if you need a hand dealing with the difficult issues that face you with this illness. It is sometimes quite hard to be strong on behalf of another. However, we all have our turn being weak in this lifetime. So, remember to give your love and support with the same generosity and grace that you would expect to receive if you were struggling with this awful condition.