An Open Letter to Friends and Family: IBS Does Not Care About Our Plans
Friends, your understanding of why we cannot go out on a whim or eat certain foods helps make things much easier for us. I would like to share some of the things that many of us with IBS face on a daily basis. Hopefully, this will help you understand why your friend declined your invitation to a dinner party or backed out of your plans.
What is IBS?
Irritable bowel syndrome is an often painful condition. It causes diarrhea, constipation, gas, and much more. The pain can be overwhelming at times. The constant need to go with IBS-D sometimes makes it impossible to leave home. Fear of having an accident is a major concern. The inability to go with IBS-C sometimes makes it unbearable to leave home. Someone with IBS-M experiences bouts of both.
IBS is known for its unpredictable nature. No matter which type a person has, it is often disruptive to daily life. Flares are highly unpredictable and can occur at any time, with or without warning. This is not your typical constipation or diarrhea, so stop comparing it to your issue with gluten.
Diarrhea and constipation
IBS is best known for causing diarrhea and constipation, but we experience much more than this. This is not the same as diarrhea and constipation you may experience periodically. This is a chronic condition, and some people experience flares every day. Diarrhea is accompanied by intense cramping, bloating, excessive gas, and severe gas pains. Think about food poisoning. Imagine having that frequently, sometimes for weeks at a time. IBS-D is like that.
Constipation in IBS-C can be extremely painful. This is a chronic issue that can cause severe cramps. You can go for days at a time without going. Yes, days. The bloating is unreal. Then when you are able to go, it causes other problems. It is painful. Straining can cause injuries. This is not a typical bout of constipation. This is constant. Do not tell me cheese also constipates you.
Gas and bloating
Have you ever had severe gas? I am not referring to the smelly gas that can clear a room. I am talking about the gas that causes severe cramping. This is the kind of gas that causes stabbing pains bad enough to make you double over in pain. It is the kind of gas that medication does not always help. IBS can cause this on a daily basis.
Bloating is another miserable part of IBS. Tight clothing is painful. Eating often causes increased bloating, and clothing that was comfortable can become uncomfortable in an instant. Add in terrible indigestion and gas pain and you have absolute misery. When we tell you we want to go home and change, do not tell us how you like to go home and slip into your PJs, too.
Hemorrhoids and fissures
Have you ever had hemorrhoids? Imagine having constant issues with hemorrhoids. Imagine having large hemorrhoids that make it uncomfortable to sit. Try having that for weeks or months on end. It hurts to go. It hurts to sit. Try going out to dinner when it hurts to sit.
If you have not had a fissure, trust me when I say you do not want one. Severe IBS flares can lead to fissures. This is a tear in an area where you absolutely do not want to have a tear. It is very painful to go or sit. The healing process can be lengthy for someone who has IBS-D and must frequently use the bathroom. It is absolute misery for someone with IBS-C who has hard, large stools. IBS-C can also cause repeat injuries and prevent healing. Do not tell us about your hemorrhoids in an attempt to compare your issues to IBS.
How does IBS affect daily life?
We may need to run back and forth to the bathroom. The need to go is urgent and frequent. The pain and cramping is almost unbearable at times. Again, imagine food poisoning and that is about as close as you can get to the experience. When you are in pain and constantly need to be near a bathroom, it is impossible to leave home. This can happen suddenly and last for weeks on end.
Just because we are not having an active flare does not mean we are okay. We may be recovering. A severe IBS flare can cause dehydration and leave you feeling exhausted. Having hemorrhoids or fissures is another lingering side effect. It takes time for either issue to heal. Do not trivialize our complaints.
How does IBS affect your social life?
Someone with IBS might not be able to leave home or may need to suddenly return home. Our social life suffers. I have had to decline invitations or cancel plans due to a flare. I cannot leave home when I need to be near a bathroom. Travel is hard when you cannot sit comfortably due to hemorrhoids or fissures. Getting dressed when you are bloated can make things worse.
Being in pain and worrying about having an accident in public is why we cancel plans and stay home. You would not leave home if you had food poisoning or a stomach virus. That is why we cannot go to dinner with you. It is why we cancel plans to go to the movies. It is why we did not attend the family reunion. We simply cannot leave home or we are in too much pain.
I have also had to fast to be able to attend an event. When someone tries to push food on me, it is torture. I am hungry, and someone is waving food in my face. People do not understand why I refuse to eat certain dishes and take it personally when I will not eat food they prepared. Some foods trigger a flare, and avoiding a flare is the goal. Our refusal to eat has nothing to do with your ability to cook.
What can I do to help a friend with IBS?
Why we cancel plans
We do not cancel plans because we are avoiding you. We cancel because we are sick and cannot go. Whether we are in the middle of a flare or recovering from a flare, IBS makes us miserable. We may be in pain or we might be recovering. Our illness dictates our daily lives. We have no control and no warning. It is unpredictable and it does not care about our plans.
Be courteous when it comes to food
We might be fasting and struggling with temptation. We might be avoiding trigger foods to prevent a flare. No matter the reason, and we do have a reason, we are still hungry. Constantly talking about food or urging us to eat adds to our suffering. It is cruel to push food on someone who cannot eat. Sometimes your friend fasted to be able to spend time with you. Appreciate their starvation and stop pushing them to eat.
If we tell you we are having an IBS flare, do not push us to do something. Do not dismiss or trivialize our pain. Understand that canceled or changed plans are not a personal attack on you. IBS dictates our schedule, and there is nothing we can do to change that. We are in pain, we are hungry, and we feel isolated when our friends and family do not understand. Be patient with us and have a bit of compassion, please.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to IBS?