Grief and Chronic Illness: How to Find Acceptance

older man grasping caneIn my work with chronic illness, I’ve noticed that people tend to move through the stages of grief. Just as when a family member or friend dies, when you’re diagnosed with a chronic condition, it’s like losing a loved one: you! Because of this diagnosis, you may lose your sense of identity or ideas of the person you used to be. You may lose your living situation or your job. You can even lose relationships. These losses can add up and can negatively affect your mental health.

After a diagnosis it could be days, weeks, months, or even years that you may spend going through the process of grieving. There may be times when you accept your illness, and other times when you don’t; that’s a normal part of the grieving process. Ultimately, you must grieve for the person you were so that you can move on and accept the person you are.

Elisabeth Kübler-Ross, MD, was a Swiss-American psychiatrist who was a pioneer in near-death studies. She discussed her theory of the five stages of grief in her book, On Death and Dying. Those same principles can be applied to living with a chronic illness. Let’s outline the five stages more thoroughly:

The first stage of diagnosis is usually denial. Denial in a chronic illness is not admitting that you have an illness. In this stage, many people simply don’t comply with medical advice or treatments because they’re “not sick.” You not only deny the diagnosis to yourself, but also to your family and friends.

Anger can surface after the initial denial stage. Anger can be pointed at the doctor who made the diagnosis, or you might blame yourself for “causing” the disease. You may feel angry toward family members who don’t have the illness: “It’s not fair!” Anger can be expressed physically or verbally, or it may be turned inward.

Bargaining is when we try to make deals with other people. You might try to bargain with your doctor so you don’t have to take medicine or follow through with treatment. “Oh please, ______, if you’ll take this illness away, I will ______.” Bargaining can wind up hurting you more than helping you.

When the diagnosis finally sinks in, you might feel depression, or feelings of sadness or hopelessness. It can zap motivation and it can change your sleeping or eating patterns. Depression can cause you to withdraw from others or make you feel empty and worthless. As painful as it is, depression in grief can be short-lived.

Finally, after progressing through these stages, we find acceptance. This is when you have come to terms with your illness, have learned about it, and have found ways to cope with it effectively. Your general attitude toward the illness is positive and proactive. You’ve learned that while you cannot control having the diagnosis, you can control what you do about it on a regular basis (i.e. take meds, seek help, exercise, etc.).

Grief of any kind can be a painful journey, for both you and your family. You may be accepting one day, then be angry the next. That’s a normal part of the process. If you find yourself stuck in any of the stages, it would be in your best interest to seek professional help. Talk to your doctor about your concerns. A counselor can also help you and your family move through the stages and find acceptance.

© Copyright 2014 All rights reserved. Permission to publish granted by Andrea M. Risi, LPC, Health / Illness / Medical Issues Topic Expert Contributor

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Sims

    June 26th, 2014 at 10:27 AM

    There are those families who never completely get through the grieving process and I think that for those who truly never process the grief of the loss that they will experience it makes the illness even more difficult to live with. Those who are fully able to go through all of the stages and they have support with them every step of the way develop this peace that others never seem to find with the diagnosis.

  • Silas

    June 26th, 2014 at 11:26 AM

    When I first received my diagnosis I will admit to getting stuck in the anger. I was angry at everyone- my family, the docotrs, God, myself. Why did this have to happen to me and why couldn’t it have been later in life or just happen to someone else?

    I stepped away from all of that though when I saw just how poisonous this was becoming to me, and I didn’t want to be that person anymore. I wanted to be able to rise above that and give back so much of what I have actually been given. It can be hard at times still, I still wonder what life would be like without that diagnosis, but I also know that I am fortunate to be here and to have experienced the things that I have been given,.

  • Andrea Risi

    June 27th, 2014 at 6:15 AM

    Thank you both for sharing your experience with grieving! Sims is correct that those who get stuck in the process can make the illness even more difficult to deal with on a daily basis. Our thoughts affect our feelings and behavior.

    Getting stuck in anger can be poisonous, as Silas stated. Finding ways to cope with and express anger can help you through this stage.

  • summer

    June 27th, 2014 at 10:52 AM

    It is so critical to work with both your primary care doctors as well as a counselor after you have been given this kind of news.

    No matter how strong you think that you are no one can or should have to go through an experience like this alone.

  • Andrea R.

    June 28th, 2014 at 9:08 AM

    I agree Summer! Sometimes it is helpful to talk to someone who isn’t emotionally involved in the diagnosis. It can be empowering to work with a therapist or a group to overcome these feelings.

  • Joey

    June 28th, 2014 at 10:44 AM

    It is hard to find that acceptance when you know that this is something that is ultimately going to change your life and generally not in a way that is going to be good. I would like to say that I always look at the bright side of things but come on, this is something that can send even the mildest of people into a tailspin and can leave you positively reeling from the news. I know that it is important to work through these issues and to take your time with it, but you also must understand that for most of us this wouldn’t be anything that we would have ever considered or would have ever seen coming and I think that is why so many of us struggle so mightily if we ever have to receive news like this.

  • Lizzie

    June 30th, 2014 at 4:18 AM

    I am so glad that you mentioned how this acceptance can change on a day to day basis. There are bound to be some days where you feel good and try to think of ways that you can use this diagnosis to also benefit other people. And of course there are the bad days when you question why this has to happen to you and you just want to crawl back into bed until you have all of the answers. This is to be expected and is in no way abnormal or strange. We all have good days and bad, those of us with chronic illness and who are perfectly healthy. You simply at some point must choose who or what is going to win, you or the disease. Afetr you make that decision, and hopefully you will choose to beat this, then you will find that you have far fewer of those days where you feel like thhe disease is going to win.

  • Andrea Risi

    June 30th, 2014 at 8:14 AM

    Joey – you make some valid points! For most people, being diagnosed with a chronic illness can be devastating. I realize finding acceptance isn’t easy and can be a constant struggle for some people. A support group or talking with others who have similar conditions very validating.

  • Andrea Risi

    June 30th, 2014 at 9:06 AM

    Thanks for the positive input, Lizzie! No one said living with a chronic condition was easy. The mind and body are so strongly connected…positive thoughts can bring a healthier mind and body.

  • Elinore M

    July 7th, 2014 at 11:07 AM

    wow, wish I had this to read 23 years ago….I only started trying to get to the bottom of my diagnoses a couple years ago…I was told first…lymes disease then fibromyalgia, then both…then needed back surgery and told osteoarthritis, a severe form…then “maybe MS ” but missing ‘2 markers’ out of the neccessary ‘number’ of markers according to a neurologist….then maybe another autoimmune disease I cant even remember….last year an ortho. Dr. told me CRPS…so, I am in a daily struggle to even get out of bed some mornings, my body hurts like hell more often than enough and now plantar hurts my joints, fingers and toes more than anywhere else and I still don’t know what exactly is the problem, or if the combo. of all of them make me like this…I’ve been through all the grief symptoms and now just feel…defeated. I want mylife back.

  • Elinore M

    July 7th, 2014 at 11:58 AM

    I need to add that I accepted that my body is screwed up with something, but I also accepted the fact that I need to know I have a problem, I let my family and close friends know too that I can’t always ‘do’ and participate in social gatherings, that some days I just wish to get through the day and not hurt too bad, and so it goes…I made an appt. to see a new rheumatologist later this month, I want to at least see if his opinion of what I have, maybe has a new or different med. that can make life a little less painful…we shall see.

  • Andrea Risi

    July 8th, 2014 at 7:40 AM

    Thank you for sharing your struggles, Elinore. I often hear how frustrating it is to receive different diagnoses from different docs. What are some ways you can “take back your life” in a situation like this? How can you empower yourself?

    It looks like you have found ways to cope with social situations and having the support friends and friends is priceless.

  • Teresa M.E

    July 23rd, 2014 at 1:58 PM

    Elinore: I really do think you have Lyme you don’t have a certain number of positive markers. Latent Lyme hides very well, so it is hard for tests to pick it up. I suggest you go to a Lyme literate doctor.

    I have chronic Lyme and understand some of what you are going through. There are a couple of good Face Book groups you could join.

    I sure hope you can start treating this awful disease!

  • june

    September 9th, 2014 at 3:34 PM

    Elinore: I suggest you make an appointment with a functional medicine doctor. Look up functional medicine doctors in your area. My daughter was told by her HMO doctors she had Ulcerative Colitis. I would not accept the illness and or it staying with her the rest of her life. She was told this in January and she is only 25. After much research I discovered functional medicine, she is now being treated by herbal supplements and a very rigorous diet, but she is on her way to recovery. If we would have accepted what her HMO doctors said she would be on many meds and just living with, with no cure

  • Andrea R.

    September 15th, 2014 at 6:00 AM

    Thank you for your input, Teresa and June! I agree that if we treat our bodies well, our minds can be well. There are holistic treatments that can be effective in helping with these kinds of physical and medical challenges. Be careful what you read on the Internet, and always look for reputable sources with professional credentials when seeking holistic treatment.

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