Grief: This word often brings up thoughts of mourning someone we’ve lost. But there are different kinds of grief that can linger for months, or even years. This includes the grief we feel for our life before being diagnosed with a chronic illness.
Grief, as described by the Mayo Clinic, is a strong, sometimes overwhelming emotion. It is a natural reaction to loss. Even though everyone experiences it, grief is a highly personal emotion.
“Grief related to chronic illness is really a lifelong process,” says Kim Gorgens, PhD, a Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver. “You grieve at the time of diagnosis, during treatment, as symptoms remit and get worse, and over time as you bump into new challenges.”
“Our former self and the life we enjoyed must be grieved when we are living with a debilitating health condition,” says Wendy Kessler, MSW, FT, a grief specialist in San Diego, CA. “Acknowledging our losses and feeling all the emotions related to that — with compassion and non-judgment — enables us to understand what we need to continue moving forward as we live with life-altering health challenges.”
Now, let’s look at how to grieve your life before a diagnosis, without losing yourself in the process.
Plan Ahead for the Ebbs and Flows
Think of grief as tidal waves that will come and go throughout your life, which can catch you off guard if you aren’t expecting them.
“You’re going to have calm sea days, and sometimes, you’re going to have really stormy days,” says Dr. Gorgens. “You need a flotation device like a caring person who lets you grieve, a go-to routine you find solace in, or service to other people.”
When you’re having a good day, get involved with a support group or reach out to a friend. Or decide what a happy daily routine looks like for you. Doing this when you’re feeling OK will better prepare you for rough days.
Preparing ahead also requires you to confront your diagnosis, which could lead to better long-term outcomes.
For instance, women with breast cancer who sought social support and actively used coping strategies (like creating a plan of action) reported more satisfaction with life and inner peace two years later, compared to those who denied or tried to avoid their diagnosis, per a classic study in Health Psychology.
Even if you don’t know how you’ll confront the ebbs and flows quite yet, confronting your diagnosis can involve a simple task like writing down all the questions you have for your doctor, according to the American Psychological Association. Ask what specific steps you can take right now to improve your health and prepare for stormy days.
Recognize When Things Are Good
Grieving your pre-arthritis life without sinking into despair can be a balancing act. It’s about recognizing the loss while also cherishing the good moments and the little things you can still control.
“It is perfectly natural to grieve your lifestyle and the felt sense of your body before you developed arthritis,” says Lisa S. Larsen, PsyD, a licensed psychologist who lives with a chronic condition that causes mobility challenging. “But there needs to be a balance between acknowledging and accepting how difficult and painful life can be with arthritis — and focusing on the things that you can do, even with the discomfort.”
Larsen’s suggests: Start with showing yourself kindness when arthritis hits hard. Avoid self-judgment about what you ‘should’ be doing or how you ‘should’ be doing it. Recognize that you’re going through a tough time and remind yourself: It’s natural to feel bad about this. Pain and suffering are shared human experiences.
Then, once you’ve acknowledged your current situation, consider what small action could make you feel a bit better in that moment. This might be some light exercise, a stretch, a hug, a chat with a friend, a warm bath, or a cool compress — whatever you’ve found brings some relief.
“Also make a list of all the things that you can still enjoy and do, even with the arthritis,” says Larsen. “This gets you thinking about your resources, which you need when you’re going through grief and pain.”
The highs and lows of grief can reveal different perspectives.
“While grief is a painful experience, it is necessary because grief also reveals our innate resilience, opens us to learning new coping strategies, and increases our capacity to experience sorrow and joy at the same time,” says Kessler.
Consider Service to Others in the Same Boat
If you feel up to it, consider how you can help others coping with the same situation as you. You may find that those conversations are healing for both you and the other person.
“When things are at their worst, one way to really reconnect with your life and larger culture of disease management is to make eye contact with other people floating in the same sea,” says Dr. Gorgens.
It doesn’t have to be a major volunteer position. It could be as simple as being a leader in a social media group for others in similar situations. Post a thread about what makes you feel better or reach out to someone who might be struggling.
Teach People That You Need to Grieve
Some people might advise you to “stay positive” and underplay your feelings of grief. However, it’s important to find people in your life who let you truly express your loss.
“Let them know that you don’t need them to solve it, but rather sit through it and listen,” says Dr. Gorgens. “You can do some coaching, or you might find someone in a previously unknown space.”
Even if you haven’t yet found someone who lets you grieve in the way you need, you can practice self-compassion.
“When you feel good, write a letter to yourself for when you don’t feel good,” says Larsen. “Give yourself all the encouragement and support that you would give a dear friend or beloved family member. Speak to yourself kindly and tenderly in the letter — and don’t forget to tell yourself that you love you.”
Keep this letter somewhere safe, ready for those moments when you’re feeling down, alone, or desperate. Whenever you need a little compassion, take it out and read it.
Learn to Identify When Grieving Becomes Self-Destructive
If your feelings of grief are becoming so big and you’re wondering if you need help from a mental health professional, err on the side of getting help.
“The answer is almost always ‘yes,’ but we don’t always recognize that about ourselves,” says Dr. Gorgens. “Part of being trapped in depression is being completely ignorant to what your needs are and the ways you’re behaving in a self-destructive manner.”
A few signs that your mental health is leading to self-destruction include using substances, not keeping up with your medical treatments, and isolating yourself from your friends.
“You don’t have to wait for a crisis to reach out for help,” says Dr. Gorgens. “If we normalize using mental health care — even if it’s because you’re not sleeping well, you feel totally unmotivated to give yourself shots, or whatever the complaint is — a really skillful mental health provider can help guide your process in that moment.”
Remember: You don’t have to have a long-term relationship with that provider. You can always go in for snack-sized support to help you get through your current wave of grief.
Get Mental Health Support
We understand how difficult it can be to cope with grief. You should contact your primary care physician or your insurance provider to learn about the supportive resources that are available to you. Here are other mental health resources for your reference:
- To find local support groups and services, you can call 1-800-950-NAMI (6264) or email email@example.com. The National Alliance on Mental Illness HelpLine can be reached Monday through Friday, 10 am to 10 pm. ET.
- For a counselor or therapist in your area, view the resources page at Mental Health America: Finding Therapy.
- If your mental health concern is an emergency for you or someone else, call 911.
- If you are having suicidal thoughts or have or are thinking of hurting yourself, call the National Suicide Prevention Lifeline’s 24-hour toll-free crisis hotline, 988, to be connected to suicide and mental health related crisis support.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
What is grief? Mayo Clinic. October 19, 2016. https://www.mayoclinic.org/patient-visitor-guide/support-groups/what-is-grief.
Interview with Kim Gorgens, PhD, a Clinical Professor and Director of Continuing Education at the Graduate School of Professional Psychology at the University of Denver.
Interview with Wendy Kessler, MSW, FT, a grief specialist in San Diego, CA.
Jim HS, et al. Strategies Used in Coping With a Cancer Diagnosis Predict Meaning in Life for Survivors. Health Psychology. November 2006. doi: https://doi.org/10.1037/0278-6126.96.36.1993.
Coping with a diagnosis of chronic illness. American Psychological Association. Accessed July 13, 2023. https://www.apa.org/topics/chronic-illness/coping-diagnosis.
Interview with Lisa S. Larsen, PsyD, a licensed psychologist in California, who lives with a chronic condition that makes mobility challenging.