It’s OK to Feel Self-Pity with Chronic Illness

While I usually focus on gratitude for all I still can do, flares sometimes cause me to long for the body I once had. I used to feel guilty, but now I realize acceptance is an ongoing process.

As I navigate life with multiple sclerosis (MS), I try to remain positive. I focus on my body’s adaptability and everything I can still do despite MS.

After a few years on Ocrevus, my disease-modifying treatment, I regained some ability as my strength improved — and for that, I am grateful.

But I’m only human, and sometimes, self-pity wins.

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Appreciation for treatment

My MS diagnosis came after 13 years of searching for an answer. I try only to look back to remember how far I’ve come — and not to dwell on the years I spent undiagnosed.

I’ve come a long way from the days when my older son’s preschool teacher walked him to my car at the end of the school day because I didn’t have the strength to walk into the school to meet him. Even when my younger son was a toddler, I felt like I was hanging on by a thread because weakness devoured me until walking and standing were no longer an option.

It’s easy to see the improvement when I look back at how Ocrevus has helped me. Most of the time, I’m filled with gratitude.

I regress during flares

Between the monthslong periods when I feel better than I did before treatment, I have occasional flares. My hands shake, and picking up my morning mug of coffee feels awkward. My legs become weak and heavy, and fatigue thickens. My nervous system feels as though it’s on overdrive. Symptoms that are usually at bay bring me back to the dark days before my diagnosis, and I feel my mountain of appreciation crumble.

During a flare, I miss the body I had 20 years ago — the one that carried me through the Negev Desert at 16 years old, across a large university campus during college, and among the streets of New York City on my 21^st birthday, just before symptoms began.

During these exacerbations, I remember the body I had when there was no fatigue, weakness, or pain — the one I now realize was underappreciated. It sinks in all over again that I’ll never get that body back, and I feel sorry for myself despite my efforts to remain positive.

Accepting a diagnosis is ongoing

I’ve come to learn that accepting a diagnosis is not a one-time event. I have peaks and valleys throughout my chronic illness journey, and I revisit periods of my past that I long for, even though I thought I’d already found acceptance.

Living in fear of disease progression consumes me during flares, and every symptom becomes a nightmare. I find myself asking, “Why me?” all over again.

Then, guilt sets in because I realize I’ve lost appreciation for a body that’s come so far. I feel bad for letting myself regress by not focusing on better days to come. Beneath this guilt lies the notion that somewhere out there are people who would give anything to walk in my shoes.

Guilt after feeling self-pity

In these moments, when I feel bad for myself for the struggles I continue to endure, I’m torn between wanting to let myself wallow in self-pity for a while and feeling guilty that I’ve lost appreciation for all I can still do — because it’s true that some people struggle in ways I don’t.

“There’s always someone worse off than you,” I’ve been told — many times — as if that should make me feel better about my diagnosis, my changing body, and the loss of who I once was.

“They’d take your struggles in place of their own in a heartbeat.” I’ve heard these words so often that they play in my mind on repeat when I’m feeling sorry for myself, and they lead me toward a feeling of guilt.

We shouldn’t feel guilty

Guilt is an unfair reaction to feeling bad for myself. The reality that others suffer more than I do doesn’t make me feel better. I’m sad for every one of us struggling with diseases that steal pieces of who we are.

As a chronic illness community, we need space occasionally to grieve the loss of the bodies we once had. We shouldn’t have to compare our current conditions to those of others — it’s enough to see the discrepancies between who we are now and who we once were.

We shouldn’t be told to be positive or to remember that it could be worse. Sometimes, we need to feel sorry for ourselves to find our way back to gratitude. Feeling self-pity with chronic illness is OK.

Self-pity is natural

Every time my symptoms worsen, and self-pity sets in, guilt follows soon after. But feeling guilty minimizes my experience with a chronic disease and makes me feel as though I’ve done something wrong in mourning the loss of my healthy body.

Allowing myself to feel guilty after wallowing in self-pity suggests my struggles are not worth grieving — but they are. And so are yours.

We haven’t done anything wrong by feeling self-pity — it’s a temporary and natural reaction to loss. By allowing ourselves to feel sorrow, we move forward — each time a little stronger than we were before.