Chronic Fatigue Syndrome, Fibromyalgia, and Grieving

After getting a diagnosis of fibromyalgia or chronic fatigue syndrome, it’s normal to feel a variety of emotions. It’s important for you to deal with these feelings and to recognize them for what they are — the stages of grief. You'll likely have to grieve for your old life in order to make the best progress at managing your new one.

In her book On Death and Dying, Elizabeth Kubler-Ross identifies five stages of grief that a patient goes through after learning of a terminal prognosis. While FMS and ME/CFS won't kill you, you could still feel an overwhelming sense of loss. That's understandable because you likely will need to make some big changes to your lifestyle.

Sad woman sitting at edge of her bed
JGI / Tom Grill / Getty Images

The stages of grief are:

  1. Denial: A refusal to accept what is happening.
  2. Anger: Feeling like it’s not fair or being angry in general.
  3. Bargaining: Promising something such as being a better person if the situation goes away.
  4. Depression: Giving up, not caring what happens.
  5. Acceptance: Coming to terms with the situation and being ready to move forward.

Once you've moved through these stages, coping will probably be easier but you still could have emotional setbacks. If you're unable to progress through the stages of grief or feel that you could be clinically depressed, be sure to tell your healthcare provider. You may need to see a counselor help you through it, and medications may help as well. Remember that clinical depression often occurs in conjunction with these conditions.

You also should build a support network, whether it be through friends and family or support groups in your community or online. Have someone you can talk to when things get rough.

Coping Strategies

Effectively managing your ME/CFS symptoms can help you be more functional and improve the quality of your life. Experts recommend several lifestyle changes, including:

  • Reduce Stress: Take steps to reduce your daily stress level and learn how to better deal with the stress you can't avoid, possibly through relaxation techniques, yoga or tai chi.
  • Get Enough Sleep: Practice good sleep habits, such as going to bed and getting up at the same time each day. Limit daytime napping, and allow enough time for sufficient sleep.
  • Exercise Regularly: Done properly, exercise can improve symptoms. However, you'll need to start slow and build up gradually. A physical therapist may help you put together a good regimen.
  • Pace yourself, but Stay Active: Keep your activity consistent day to day. Avoid the temptation to do extra on your good days, because that could lead to more bad days. While some people leave their jobs and quit activities due to ME/CFS, people who stick to moderate, consistent activity levels tend to feel better than those who are inactive.
  • Maintain a Healthy Lifestyle: This includes eating a balanced diet, limiting caffeine, not smoking, getting plenty of fluids, getting adequate rest, managing stress and exercising regularly.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  • 1998-2007 Mayo Foundation for Medical Education and Research (MFMER) "Chronic Fatigue Syndrome"
  • Judy Bear, First published in MSN Cancer Forum “Stages”
  • Regina P. Gilliland, MD, Department of Internal Medicine; Division of Rehab Medicine, Mobile Infirmary Medical Center “Fibromyalgia”

By Adrienne Dellwo
Adrienne Dellwo is an experienced journalist who was diagnosed with fibromyalgia and has written extensively on the topic.