When you are diagnosed with Colitis and have experienced its life-altering symptoms, it is hard to think about anything but your own physical pain and inconvenience.
At some point, it becomes obvious to the people you share your life with that something serious is going on. Frequent trips to the bathroom, last minute cancellation of plans, and flare-ups of pain that keep you in bed for days can’t be hidden, particularly from your significant other.
If someone is spending their time caring about you, they deserve to know what’s going on. You deserve to feel the relief that comes from not carrying the burden alone. Regardless of what stage your relationship is in, whether you are newly dating or have been married for 10 years, it’s a conversation that can’t be avoided.
Don’t forget who you are
Because of the nature of the disease, some people find it awkward to discuss. There might be more uneasiness if you have only been dating for a month or two, and don’t know the person well enough to anticipate a particular reaction. Different levels of closeness and different stages of relationship will determine the particular angle you choose to approach it.
One thing to keep in mind for yourself, is that you are not your disease. You deserve to have someone care for you despite what you may see as your limitations. It can be tempting to downgrade yourself in your mind as too damaged or less attractive. It may be a fight to keep your self-confidence and sense of playfulness up.
Perspective is everything
A positive sense of yourself can happen. It would benefit you to maintain a sense of your own worth. Finding a strong mentor may help you. Someone who has been through it, and remains confident of themselves. Such a person could be found online, in a forum or support group. It may be motivating for you to eventually be a mentor and help someone yourself in the future.
Once you have the perspective of feeling deserving of love, it is time to let your partner (or special new person) in on your illness. Someone who is truly worthwhile will care about you for who you are and won’t be scared off by the unpleasant nature of your symptoms.
There must be a sense of trust and comfort level to talk about it. There are different types of people and every relationship has different dynamics, but trust needs to be there. Believing that the person will be able to handle it, will be a decent enough person to show empathy, and sees you for who you are are important metrics.
Timing can affect the outcome
Sometimes the conversation happens when it happens, but ideally choose a time when everyone is relaxed and stress-free. It will be easier to think clearly if you are not in the middle of a flare-up, lying in the fetal position and in all kinds of pain. It is good for this person to know you are still you, and can have typical good times.
Their emotions will be easier for them to work through if they don’t hear the information while watching you in tremendous pain. By hearing it in a regular, drama-free moment, they can see that life with you will not constantly be about the disease, even if it is ever present.
Educate to promote compassion
Though it is not always about the disease, it is to your benefit to communicate thoroughly. You don’t have to go into graphic details to be thorough. You may want to, but think it through as to how much they really need to know to be able to understand.
If you are in the beginning stages of a relationship, keep it light. They need to know, but since they are not yet living with you or headed to the doctor with you, they may find it heavy to hear all the details. It would be fair though to disclose that it is generally a lifelong issue, but one that may go into remission at some point.
It is helpful to remember that everyone has challenges they need to disclose in a budding relationship, whether it be emotional issues or physical ailments. Everybody has some problem at a point in their relationship that requires patience and tolerance from their partner. This one just happens to seem more embarrassing, since very few people like to talk about bowel and bathroom issues.
Keeping in mind the potentially awkward subject matter, approach the conversation mindful of your partner’s personality.
Some people find it helps to approach educating their loved one about their problem with humor. Physical challenges are always easier to deal with in a lighter tone. You could start by saying, “You may have noticed I have bathroom issues” or “I have issues with my gut.” You set the tone for their attitude and response, and can reassure them by your approach.
No matter the stage of your relationship, certain key points should be addressed:
- You have an incurable disease that is not going away anytime soon. (That you know of.) It involves your large intestines having inflammation and not working properly. (Some people find it helpful to use the term large intestines instead of colon. To the general public the word ‘colon’ has more of a waste connotation.)
- Let them know about varied possible causes. It can be caused by infection, inflammatory bowel disease, allergic reactions and the like. Many people may try to be helpful and ‘fix’ you. While diet changes, medications and supplements may help, they should know they don’t need to try to figure it out. Some people find that bringing their loved one to the doctor helps to solidify their illness as legitimate.
- You’d like their support. While you may not want their ‘helpful solutions,’ state that you need their support when you want to try possible remedies (diet changes, supplements, surgery, etc.) Relate the importance that at times your food choices can make or break you.
- How it makes you feel, mentally and physically. You can be as general or as specific as you like. If it makes you feel invisible at times, as if people don’t notice it or recognize it as a true disease, let him or her know. There is no right or wrong amount of detail to be given. You may wish to give an overview initially, and get into specifics as symptoms come up.
- Let them know things that help you. If they ask how they can help, delve into the type of care you’d like from them. Be clear about what you don’t want from them. If you find just their presence a comfort and don’t need much else- they should know. If you don’t want them to tell anyone or don’t want to be doted on at times, go ahead and let them know in a kind, matter-of-fact way.
- Go into how it will affect your lives. Better to preempt this before you find yourself at a friend’s for dinner and can’t eat what is served. Let them know that at times plans may need to be cancelled due to a flare-up, and that you have to watch what you eat or where you go to eat. Your ability to be spontaneous is affected but you are still the fun person you always were.
- Bring up a positive such as, you are a stronger person for it. You could mention that many people with this disease are able to do most of what they could before, involving fitness and career aspirations, for example. Perhaps with less spontaneity of course.
It’s difficult for them, too
Remember that very few people have the ability to be a hundred percent understanding and empathetic when they haven’t suffered from the same problem. Give them time to process the information and try not to worry about their initial response.
If you are at a loss for words when your partner has questions or misconceptions, email them a link to Emotional Factors Q & A on the Crohn’s & Colitis Foundation website.
Reassure him or her that they don’t have to carry the burden of being your emotional support alone. Appreciate them being there for you. Try to find outlets where you can be heard and understood outside of your relationship, such as support groups and online forums. Connect with your local chapter of the Crohn’s & Colitis Foundation for support services.
To the best of your ability, be the person you want your partner to be. Teach him or her how to treat you with your own kindness, caring nature and patience. By having this discussion, your relationship could become closer. You will find out just how amazing this person is.