To move on with chronic illness, I had to process my grief

I thought I might never get over the loss I felt upon learning I had acute hepatic porphyria.

In my early 30s, I lost my job, my ability to do traditional full-time work, and my medical coverage, and I couldn’t find an in-state provider to take my case. The grief consumed me — until I found a box within myself big enough to hold it all. But some days the lid would slip off, and on others it’d burst open.

The reality was that the storage was temporary. Deep down, I knew this box was a desperate attempt to survive and move forward. But that was a problem for future Claire.

In the meantime, I did my best not to disturb it. I wasn’t ready to process my feelings.

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October 20, 2020 Columns by Claire Richmond

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Learning what it means to be incurable

After my diagnosis in 2017, I sat on the couch and binge-watched videos of porphyria patients on YouTube and Instagram. It was different from reading about a list of symptoms or a gene mutation affecting the heme pathway in my liver. I watched people, many of them my generation, whose lives had changed forever because of this disease, some whose whole bodies were paralyzed. It was scary.

I’d just spent six months in and out of hospitals, fighting to be heard and treated like a human. But I realized for the first time that this disease might be something I don’t beat.

Hot wetness ran down my cheeks. For the next two years, tears were dangerously close to the surface, and the smallest thing could disrupt my stoic facade. I knew I needed therapy to help me rip open the box, but not every therapist is well equipped to deal with chronic illness.

Once, during my first visit with a therapist, I explained I was overwhelmed: “I’m sick of feeling so sick.” I told her about the reemergence of a childhood eating disorder as a way to gain control.

“Hmm, well, you look good to me,” she responded.

That was our final appointment.

From doing to grieving

On social media, I went from the runner to the sick woman. I wanted to share what I was doing, because I thought that’s what you were supposed to do. But it was confusing. I wasn’t ready. I didn’t want the pity of acquaintances. I learned quickly that people’s ability to absorb information about my illness is limited. Even close friends who were receptive couldn’t really understand — how could they? — and I didn’t know what to do with that disconnect. I’d never felt more alone.

Uncertainty clouded my future and left me blindingly optimistic. I’d adopted a protective mindset, convincing myself it’d get better. I made decisions I’d regret later, rather than owning the misalignment.

“Doing” was a great distraction. On an energetic day, I could stay busy and not have to feel a thing. At some point I’d either overdo it or experience a flare, and then the internal floodgates containing my anxiety would rip apart.

When you get diagnosed, nobody tells you to grieve.

I’d always believed that the stages of grief were linear, that I’d go right through them as if I were climbing a ladder to butterflies and rainbows. That was a lie. My denial, anger, and depression come and go in circuitous, grieving waves, depending on the day.

There’s no fast and easy way to grieve. The mental processing may seem crushing, but it’s necessary to reach a place of acceptance. I finally realized that when hard feelings rolled in, it hurt more to hold them in than it did to let myself feel them. I can’t describe how difficult that was at first. But all of my feelings were valid. Eventually I found a great therapist, and things got easier.

The bigger picture and you

Undiagnosed medical post-traumatic stress disorder runs rampant in our community, and often providers won’t make mental health referrals unless we explicitly ask for help. Even though I’ve yet to meet someone with a rare or chronic disease who hasn’t experienced medical trauma, I know plenty who minimize their experiences.

There’s also a collective grief over lost time, missed vacations, and life milestones that were somehow limited or neglected because of our bodies’ needs. Worse still, we watch more able-bodied peers experience them all.

It feels lonely when you’re 1 in 100,000. We can keep holding all the feelings inside our makeshift container, but it’ll eventually overflow. And waiting for the situation to change will only cause more suffering. I promise you, you’re not really alone, it does get easier, and there is help.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.