What does it mean to heal when you have a chronic illness?

The word chronic implies that something is ongoing. Many chronic illnesses, such as autoimmune diseases (like the one I have – Sjogren’s), don’t have a cure. This simple fact may make it seem like healing chronic illness is impossible …but like so many things, that just depends on your perspective!

During the first couple of years of my diagnosis, I resented the use of the word “healing” when it came to my illness. I saw it as a slap in the face – don’t you dare tell me I can heal when I know this can’t be cured. It seemed black and white to me – my illness will never go away, therefore, I cannot heal.

Nowadays, I embrace a different definition of “healing.” Some tenets of this definition are:

• Healing is a process, not an ultimate goal
• The goal of healing is not necessarily to eliminate the disease
• The goal of healing is to be at peace with & work in harmony with the disease

In a wonderful piece on psychology today, Lissa Rankin, M.D. described curing as “eliminating all evidence of disease” and healing as “becoming whole.”

I love this way of describing it because it shows that the disease does not need to go away in order for you to heal. Healing is about much than just eliminating symptoms – it is a holistic process that involves the mind, body, and soul and a lot of inner work and growth. It’s as much about your mindset towards your illness as it is the actual illness!

Here are a few ways that you can heal, even when your illness cannot be cured:

1. 1. Acceptance

I’ve written about acceptance on here before – in terms of honoring your feelings, “letting it be” instead of “letting it go,” and how it’s the last of the 5 stages of grief you experience after a diagnosis.

Acceptance is often misconstrued as giving up or quitting. But accepting that you have a chronic illness is simply accepting reality. Saying “I have a chronic illness” is not saying “I am letting this illness rule me” or “I’m not going to do anything to improve my life with this illness.”

It’s saying “this is my truth and I’m going to explore what it means to live well with it.”

Acceptance is not passive or indifferent. I view it as an empowered decision to work in harmony with your reality/disease.

2. Learn how to live/work with disease

Once you accept your disease, you can begin modifying your life accordingly.

Again, modifying your life doesn’t mean you’re letting your disease win. It means you’re showing your disease that it can’t stop you from living your life! (You may just have to do things a little differently than others do).

For me, this looks like:

• Finishing my college courses online
• Working part-time
• Building in time every day to rest or nap
• Being careful about which plans I commit to
• Saying no to or canceling plans when I’m not up for them

Honestly, a lot of the process of figuring out how to modify your life for your specific conditions is trial-and-error. It takes a little creativity and a lot patience.

Frankly, it took me years to learn how to live in harmony with Sjogren’s, and its still an ongoing process (one that I don’t believe ever ends). I’m still learning how far I can push myself without sending myself into a flare.

3. Improve resiliency

Over the years, I’ve noticed that my recovery time from flares has fairly steadily decreased. This correlates with my learning process of how much my body can handle and modifying my life accordingly.

My first flare ever was my worst flare ever. I had been feeling less than 100% for many months, but had been attempting to continue my usual level of activity because I didn’t realize anything was actually wrong. After I got my diagnosis, it took me a good 4 months to get back on my feet (and was still very physically and metaphorically feeble, at that).

Since then, I’ve had many flares that took weeks – months to subside. They always take longer when they occur in conjunction with acute illnesses, like a stomach virus, too.

My last major flare was in August, 2018, and took a good month to ease up. Since then, I’ve certainly had periods of higher fatigue, but nothing that took more than a few days to die down.

As you learn to listen to your body and modify your life, you may notice that, although symptoms may still occur, they will be lesser or will abate faster!

4. Find a new normal

When you’re diagnosed with a chronic illness, the amount of changes you have to make to your life can be overwhelming. In my case, I had to leave college, move home, accept that I wouldn’t be able to work full-time for a long time (or maybe ever), I would have to spend a lot more time resting, start taking naps, etc.

In the beginning, this felt like a huge blow. I had to make so many drastic changes and give up the plan I had created in my head for what I wanted my immediate future to look like. People kept throwing around the words “new normal” and, at the time, it felt like those changes would never feel normal.

Almost four years in, I now feel much more settled into my new normal. I no longer begrudge my need to modify my life around my limitations. Instead, I feel grateful that I’ve been able to find ways to do meaningful work, that I’m passionate about, that also work with my health needs.

Honestly, every day that goes by, I forget more and more what its even like to have the energy of a typical twenty-something. I can hardly remember what it’s like to be able to tire yourself out one day and rely on the fact that you’ll wake up with renewed energy the next. I’ve forgotten how many things I used to be able to do in a day, and am often baffled when I hear friends/peers talk about their busy schedules.

The longer you live with something, the more normal it starts to feel. This is part of how you heal.

All of this to say – I still have a chronic illness. It still flares. It is not “healed,” but I am on a lifelong healing journey.

I have done (and continue to do) so much work on my mindset. I have made countless changes to the way I live my life. And despite having a chronic illness that does present some limitations, I am whole.

A few months into my diagnosis I wrote this piece that I think encompasses the spirit of healing pretty darn well:

At the time, I had no idea what was to come. But I think even then I realized that this illness wouldn’t stop my life or leave me a fraction of a person forever. I knew that healing and wholeness was possible.

For anyone out there in a difference phase than I am right now, feeling like a sliver of the person they used to be, I see you. I won’t presume to know your specific struggle, but I hold space for it. Healing won’t be easy, and it won’t be pretty. But I promise you, it is possible.

*I also just want to note that everything in this post is based on my personal journey with chronic illness, and all illnesses are different and affect people very differently.