Those of us who have had IBS forever know no different and though we have pangs of self-pity about “why us?”, we get on with the only life we have ever known.
However, if you get the diagnosis later in life, it can come as a shock that rocks your world – and not in a good way. The need to go through the grieving process for the good health you once had is a real thing and should be observed. Acceptance does not come easy and is far down the track for the moment.
The 5 stages of grief and loss are: 1. Denial and isolation 2. Anger 3. Bargaining 4. Depression 5. Acceptance.
This was first proposed by Elisabeth Kübler-Ross in her 1969 book On Death and Dying.
-
Denial & Isolation
At first, you will deny that you could possibly have anything so terrible that will affect you for the rest of your life. You are a healthy individual who eats well. How could this possibly have happened to you? You try to rationalize it away. This is a defence mechanism to help you through the initial shock. This stage can last for some time and I often see it in my clients who have had a recent diagnosis. They will fight me at every step and I have to give them leeway as they wrap their heads around the reality of the situation.
-
Anger
This anger is often irrationally directed at those around you – your family and friends can take the brunt of this but also your doctor or even all health practitioners. They don’t know what they are talking about. They have no compassion. Why haven’t they found a cure yet!? The family doesn’t understand and so you pummel them with information they don’t need to know. You spend time aggressively trying to make them understand. Then you feel guilty for being angry, and this makes you angrier. With time you will need to leave your family alone or you will alienate them. I have spoken to many sufferers who have broken marriages and they can’t rule out the effect that their illness had on their divorces. A supporter can support only for so long before they get burnt out and need to move on. So, try to make this stage as short as possible.
-
Bargaining
You are feeling helpless and start bargaining. If I eat even more healthily, maybe my gut will heal. So you try the Paleo diet, the AIP diet, the elemental diet – any diet that has no scientific backing but professes to be a cure-all for anything you can ever suffer from. You eliminate dairy and wheat because they are villainized by anyone who writes about health on the internet so surely now you will feel better. You try desperately to regain control of your life, certain you almost have the answer.
-
Depression
Nothing works and you fall into depression. Life is no longer worth living. You can’t eat out. You are terrified of travelling. There’s no point in meeting up with your friends because you can’t join in. You are afraid to leave home in case you need a toilet. Work is miserable. What’s the point in even trying to get better since there is no cure. No one understands and you feel isolated and alone.
-
Acceptance
You may never see beyond your anger or denial. But I hope so. Acceptance is an important part of moving forward to a solution for your feelings. We know the answer is the low Fodmap diet so you can control your symptoms but there is no cure and that’s the tough part to accept. Nearly every client of mine reaches a place where they are symptom-free and they start to believe they have healed their gut and can go back to normal life, so they eat something that is on the prohibited list and get slammed for it. Sometimes this lesson has to be learned a few times before acceptance of the reality that this is not going anywhere sets in.
So, be assured that there will be a mourning process for the self that you have lost. All your emotions are normal and will evolve through the stages of grief to a place of acceptance. Once that acceptance is in place, you can start planning your new life around your restrictions and get on with enjoying each day as it comes.
I agree with you Karen. I have had all those feelings.
Ben, I hope you have come out the other end of the grieving process now. By the way, my name is Suzanne, but Karen is a pretty name too.
I am def grieving! At 40 “something” they are pretty sure this is the root cause of my issues. Why did I suffer so long? And why is it getting worse? And why does eating all my favorite health foods (peppers, onions, mushrooms, avocado, wheat bread, cheese, etc) make me so uncomfortable. Why cant I be normal? Ugh! And I am reminded every time I think I can have “oh just a little bit” of whatever it is… That I cant. 🙁 its learning now to manage it & make a lifestyle change. Good article
It is certainly tough to come to terms with but acceptance should be down the road.
This article helps me understand many of the feelings that I have been facing in recent years as IBS symptoms became more prominent in my life. I definitely have traveled on a journey through these stages of grief and not reached acceptance yet. However, as I contemplate this informative article by Suzanne Perazzini, I realize that I have been given hope that I will achieve acceptance and move on to a full and happy life!
I am glad this has been enlightening for you. There is indeed hope. Good luck with moving towards acceptance as quickly as possible.
I was diagnosed in Feb 2018 with Diverticulitis, have all blood and stool tests done and Endoscopy and just had colonoscopy . Have severe Diverticulosis with possibly induced IBS. Also developed anxiety and panic attacks. Lost 40 lbs, and am afraid to eat. So I’m trying to accept this is my new life, and diet is tougher for me. Not knowing what to eat that won’t cause pain. But the anxiety and depression hold me back. I’ve isolated myself, and still unable to return to work. Everything I see or find on internet costs money, and I cannot afford any of it. So I just keep trying to get ideas, suggestions on how to move forward and get my life back. Thanks
I am so sorry to hear you have been through this, Vickie but there is hope because the low Fodmap diet truly works. Make sure you watch my videos on Youtube: https://www.youtube.com/user/suzannep1000/
I’ve had the “IBS” dx since 2001. It seems no matter what I’ve tried it hasn’t healed my gut.
Ive spent thousands, eat Organic and have had to eliminate nearly everything eventually. The last 5-6 years have been the worst. Sensitivities and intolerances have increased ridiculously!
My body needs nutrients!!
Those with IBS who are not on the final stage of the low Fodmap diet are usually malnourished. Please check out my coaching programs here: https://www.strandsofmylife.com/coachingprograms/ There is light at the end of the tunnel.
Thank you for this. I am in the middle of all this right now. At the moment, I feel quite angry and depressed, frustrated and overwhelmed. And it’s affected people around me, which adds to the intensity during the lockdown. I appreciate all you’ve written. Monique
It is incredibly hard but try not to fight the process and you will eventually move past the anger stage, but it can take time.
Thank you Suzanne, yes I have had all these emotion.
I won’t give up or in.
I skipped all these emotions and have gone straight to being grateful for an answer to my problems. I haven’t actually been diagnosed with IBS but I have a lot of problems with constipation and speaking about it with my GI doctor, he just said it’s because I have extra twists and turns in my intestines (discovered in a colonoscopy and endoscopy). I have been on different laxatives for so long and I have been so frustrated that neither of my doctors could help me. I had to find a new doctor because of insurance and in speaking with her she put me on a low FODMAP diet in my first visit and within a few days I started having regular bowel movements. I am not on any medication!
I am very glad to hear that. Make sure you watch your fibre levels are right for you and you should be able to keep your constipation under control with the low Fodmap diet.