It was two years ago last month that I was diagnosed with Sjogren’s Syndrome. I recently wrote in a Facebook group for people with chronic illnesses:

“Sometimes I feel like I’ve come so far in the past few years and sometimes I feel just as lost, alone, and sad as I did in the beginning.”

But one thing that really helps me feel less alone is talking to or hearing the stories of other people (especially young women, like me) who are living with chronic illnesses. That’s what prompted me to write my post “6 Celebs with Chronic Illness.”

A Body Out of Balance

I recently read (actually, more like devoured) the book “A Body Out of Balance,” which is all about Sjogren’s Syndrome, and was written by a patient and doctor. Books like this also help me feel less alone! Reading some of the lines in the book practically brought me to tears because it felt like I could have written them myself! Seeing that so many others have felt the same way was extremely comforting.

One of the chapters in this book brought up a topic that I’ve wanted to write about for a long time. That topic is the 5 stages of grief and how they relate to being diagnosed with a chronic illness.

We normally reserve the 5 stages of grief for the loss of a loved one, but they can be applied to the losses of other things too. For example, when you’re diagnosed with a chronic illness, you grieve the loss of your health.

The word “chronic” implies that the disease is lasting – it’s not the type of disease that can be cured with medicine or lifestyle changes. Those things can certainly help ease symptoms, or even send you into remission, but they won’t make your disease disappear. Your disease will become a part of you, and you will become a new you, so it’s natural to grieve for the person you once were.

The grieving process can last a long time, and due to the nature of chronic illnesses oftentimes being progressive, they can lead to what “A Body Out of Balance” describes as “mini-deaths.” As you move along in your chronic illness journey, you may experience new losses of “what you were once able to do physically, the loss of ways in which you defined yourself and gained your self-esteem, and the loss of hope for the future you had planned” (Fremes & Carteron, 2003). (That is one of those lines that I resonated SO MUCH with).

When I was diagnosed with Sjogren’s, I had to leave college (which messed with my identity as I had always assumed I would do the traditional 4 years of schooling), I had to move home (living with roommates in college gave me a sense of independence, which I lost), I lost friends, I couldn’t work as many hours as I used to, and as I learned what my “new normal” entailed I began to fear for the future.

Will I ever be able to work a full time job? Will I ever be independently financially stable? Will I ever find a partner willing to accept that I had a chronic illness? Will I have a difficult time having children? Will I eventually develop more debilitating symptoms, like joint pain or extraglandular involvement? Will I be one of the 5% of Sjogren’s patients who develop lymphoma?

The plan I had created for my life seemed like it had been completely shot to hell. I couldn’t live my everyday life the way I used to be able to, and so I went through the five stages of grief. Or maybe I’m still going through them! This whole thing is a process, or a practice, if you will. I don’t think anyone ever reaches acceptance of their diagnosis and just stays there.

The 5 Stages of Grief (After a Diagnosis)

1. Denial

“It’s not true.”

“It can’t be.”

“They’re wrong.”

All things that ran through my mind after I received my diagnosis. When you’re 20, you don’t expect to be diagnosed with anything, let alone a disease that is most common in women over 40 (though I’ve always been an old soul – lol). The most natural coping mechanism is to simply tell yourself that it isn’t true! And when it’s difficult to believe something, it’s even easier to convince yourself that it’s not real.

2. Anger

This anger can be directed at:

• Your body

Why did you betray me?

• The disorder itself

Why does this even exist?

• Your doctors

Why did you have to diagnose me with this?

• God

Why did you let this happen to me?

• All healthy people

Why didn’t this happen to you?

But no matter where you direct your anger, it’s not overly helpful, because there really isn’t anyone or anything that deserves the blame for your diagnosis. It’s no one’s fault. However, it is a normal emotion to feel and you should honor it and allow yourself to work through it.

3. Bargaining

“If I take my medicine, it will go away.”

“If I walk a mile every day, it will go away.”

You may try to convince yourself that you can bargain with your disease. That if you follow a certain set of steps, perhaps laid out for you by your doctor, that your disease will go away. And while these steps (like taking your medications or exercising) will probably help with symptoms, they won’t change your diagnosis. As we established above, your disease is no one’s fault, so who are you really bargaining with anyway?

4. Depression

Once you’ve run the gamut of other emotions and realize that you can’t deny or bargain with your diagnosis, and that it’s no use being angry at it, it’s normal to feel sad, defeated, or depressed. Maybe you’ve lost physical abilities, friends, a job, confidence, or any number of other things. Of course you’re going to feel depressed! But depression is the last step before acceptance, because you’ve at least finally accepted that this isn’t going away.

5. Acceptance

Ah, acceptance. A topic I’ve written about extensively (see: “Acceptance Without Exception,” “Honoring Your Feelings,” and “Let It Be” for a few examples). Acceptance is NOT passive or indifferent. It doesn’t mean you’ve quit or given up. Sometimes it can seem that way, because you stop fighting so much, as you’ve been doing throughout all the other stages of grief.

Rather, acceptance is an active an empowering decision not to let your disease rule you. Because once you accept it, you can start to modify your life around it. It can sometimes feel defeating to modify things, because it feels like you’ve let your disease win. But in reality, modifying things is showing your disease that it can’t stop you from living your life, you just have to live it a little differently.

If you’ve ever felt any of the emotions above, you are most certainly not alone. I’ve felt them, and so have countless others. The “5 Stages of Grief” is a psychology term, after all. They wouldn’t write about it in textbooks and teach it in college courses if it didn’t affect many people.