IBD Living Family and Friends

Family & Friends

We know that IBD not only affects us, it affects our families and our friends. It affects everyone
around us. We have compiled thoughts on how those of us living with IBD can help our families
and friends and how they can help us.

How Those with IBD Can Help Family and Friends

Understand that nobody will know how you are feeling unless you communicate to them
what you are going through
Educate your family and friends on your disease. Get pamphlets from your doctor or print
out info from the internet and provide them with the information that they can use to learn
about your condition.
Ask your family and friends to join you at your local CCFA meeting.
Be open an honest about what you are going through. No one can hear what isn’t spoken
and although it would be nice, people can’t read your mind.
Let everyone know in advance of gatherings and social events that you may attend but it
depends on how you feel. People that don’t know what you deal with may think that you
are a flake when in all honesty; you just get sick out of nowhere and can’t leave the
house. If people know this, they will understand better.
During holidays, discuss food items that are okay for you and what you will bring to help
out. Always bring something that you can eat so that you aren’t uncomfortable and so
that they don’t feel uncomfortable. You have to be responsible for yourself.
Talk, talk, talk. Communicating your disease is a great way of gathering support. You will
be amazed how many of your friends will say “Oh, I know someone who has that!”
Understand that they will NEVER know what you are going through and you cant expect
them to
Your family and friends are worried and stressed for you and they are trying

How Friends and Family Can Help Us

Educate yourself on what your loved one is going through
Understand that IBD is not IBS, GERD, or any other disease. It is IBD. It is serious and it
is not anything to make light of by comparing it to another disease or syndrome.
Encourage your loved one to attend local CCFA support groups and attend the meetings
with them.
Never place blame on them for having a flare or getting sick. They have done nothing to
cause their disease or their flare.
Know the signs of depression because IBD and its medicines can cause depression.
Educate yourself on the medicines and their side effects. If your loved one is on steroids,
there will be moments that they aren’t themselves. It will be easier to handle those times
when you know it is the meds and not the person. Other medicines have adverse effects
as well and to know them will help you better deal with them.
Talk openly about their disease. The silence surrounding IBD involves shame. Nobody
should feel shame because they have IBD. Let them know that they can talk to you about
anything and don’t react negatively to what they talk about.
Know that appearances can be deceiving. They may lose weight and look okay but they
probably feel horrible. IBDers do not need diet advice or gasps when they walk in to a
room.
Understand that they may have to cancel plans. IBD attacks can happen at any moment
and they can happen when you have made arrangements. If your loved one or friend has
to cancel plans because they don't feel well, please be understanding and try not to make
them feel guilty.

The following suggestions on How Friends and Family Can Help are from our Mom, Susie, whose
love and support knows no end when it comes to this disease. Thanks for the suggestions Mom
and for living by them.

Listen. Listen. Listen. Be supportive and listen to your loved one for as long as they need
to talk.
Be encouraging but not overly optimistic. Saying, “It’s going to be fine” or “You’re going to
be okay” is not reality. “What can I do to help” opens up a world of support
Praise them for their efforts in dealing with their disease and medications
Laugh with them but not at them
Ask them how they feel and really listen when they tell you
Understand that IBD flares are not planned and they will come at inopportune times.
Flexibility is key.
Be an advocate for them
When they say they don’t feel good, understand that they really don’t feel good
As a parent, use your instincts and intuitions. Go to the doctors with them and to the
hospital.
Family and friends have to understand that this disease will affect them as well. It affects
the whole family and although it may take time, there has to be an acceptance of that.
Don’t over-dramatize things because you can create unnecessary fear
Some times, no matter what you do or what you say it is going to be wrong

Last Updated 2/24/07