How PTSD Has Affected My Self-care

Colleen Steele avatar

by Colleen Steele |

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My son Cullen is 22, and I’ve been his primary advocate and caregiver for 14 of those years. I’ve seen him through pulmonary hypertension (PH) and heart and double-lung transplant recovery, and I continue to support him as he approaches eight years post-transplant next month.

You would think after all this medical-related experience, I would be a top-notch advocate for my own health. I’m no psychiatrist, but I’ve recently concluded that some form of post-traumatic stress disorder (PTSD) makes self-care a heavy burden.

I procrastinate.

When a family member exhibits a concerning symptom, I’m quick to seek answers. I’ll research and call a doctor faster than they can say, “My arm hurts when I do this!”

But I went for a week with numbness in my left foot and leg before seeking medical help. When I finally called, it was only because Cullen insisted.

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Why did I wait?

I waited to see if the problem would go away on its own. I’m busy taking care of my family, and if I’m sick, how will I continue doing that effectively?

I don’t know how to take myself off caregiver mode.

When Cullen had PH, I always feared he might have a stroke during a pulmonary hypertensive crisis. Thank God he never did, but I made sure I knew the signs in case it ever happened.

I called my doctor about the numbness, assuming I would just make an appointment. I was surprised to be told to call 911 and ask for an ambulance. I argued ‌that I knew the signs of a stroke and that I wasn’t having one.

The thought of flashing lights and the sound of emergency sirens triggered memories of Cullen’s past medical emergencies. I listened to my pounding heart and decided that if I called 911, I would have a stroke! Instead, I drove myself to the emergency room (ER) and waited four hours to be seen.

Sitting in the waiting room turned out to be another PTSD trigger. I found myself focusing on parents comforting sick children. I felt concern for an elderly man who had taken a nasty fall and was holding his arm. I considered offering my spot in line to these patients I diagnosed as worse off than me.

I fought the urge to assist people in wheelchairs. I was worried about strangers who became impatient while waiting and gave up and went home. A heart patient in a wheelchair next to me was concerned he had missed his name called. I signaled a nurse, but he unfortunately had a few more hours to wait, as I did.

The man turned to me and asked, “Are you OK?” His kind question reminded me ‌I was at the ER for me!

If X-rays and bloodwork say I’m fine – then I’m fine!

As I predicted, test results and X-rays didn’t point to why my foot and leg were feeling numb. I felt foolish being there, but the doctor explained that compression neuropathy, which she believes I have, is caused by direct pressure on a nerve. Finding that specific nerve is not always easy. She recommended ‌I follow up with my internist.

I returned home, told my family I was fine, and ignored incoming calls from my family doctor. Cullen reminded me ‌I didn’t settle on inconclusive X-rays and labs when he started having chest pain and trouble breathing 16 years ago. It was two years of advocating, multiple echocardiograms, and a right heart catheterization that diagnosed his PH.

I followed up with my doctor. She has referred me to a neurologist for extensive testing and the possibility of a future procedure or treatment to control the neuropathy.

I experience anxiety over my anxiety.

Since turning 50, I’ve become a collector of symptoms, including neuropathy, so I killed a flock of birds with one stone during the visit with my internist. I felt embarrassed by the number of concerns I had. To make sure I addressed them, I made a list and handed them to the doctor.

Before checking the list, she gave me a sympathetic look and asked, “Colleen, haven’t you been under a lot of stress for a long time?”

One simple question sent my mind back to how emotional it was when before Cullen’s PH diagnosis, doctors thought anxiety triggered his symptoms.

I felt shell-shocked by what my doctor said, but thankfully bringing a list turned out to be good self-advocacy. We discussed and agreed on several likely stress-induced symptoms and how to handle them, including a treatment for migraines.

There are a few symptoms, however, that could relate to the neuropathy, so she ordered another test, but neither of us feels there is serious concern.

I’m hopeful for simple answers and solutions, neither of which I’d receive if I’d let my anxiety over my anxiety keep me from the medical care I deserve.

Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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