Tag Archives: aging

Accessibility + Dis/ability, Aging

Why Getting a Diagnosis Can Be So #^&! Hard

In my mid-20s, I started having sudden blinding headaches sometimes accompanied by vomiting, confusion, and slurred speech. I also had weirdly intense reactions to familiar smells. I didn’t know if the smell reactions were related to the headaches and I couldn’t figure out what was triggering the headaches. I didn’t have health insurance and couldn’t afford to miss work, so I just hoped really hard that the headaches wouldn’t hit while I was at work.

The one time a headache hit at work, I was alone, closing up the restaurant I worked in. I lurched around, doing my best to complete the end-of-day tasks and then stumbled to the bus stop, where I vomited before boarding my bus. When I got home, I called my boss to tell her I hadn’t been able to close up properly because of a health scare. She was sympathetic, and having been diagnosed herself with a rare disorder, she encouraged me to see a doctor and pay out of pocket.

By the time I saw the doctor a few days later, I wasn’t having a headache and I appeared fine. He seized on the date of my last period. PMS, he said.

“What about the smells?” I asked.

“Probably unrelated,” he said with confidence. I felt stupid for having mentioned them.

“This isn’t like any PMS I’ve ever had before,” I argued weakly.

“PMS doesn’t show up the same way every time,” he said. “We could do a spinal tap, but it probably wouldn’t show anything. And it would be expensive and painful.”

I went home to my husband, embarrassed that I had spent money we didn’t have to learn I had PMS.

Six months later, I had health insurance. The headaches and smell sensitivity continued. I mentioned the symptoms to my new PCP, but he wasn’t impressed. Was there a reason I didn’t trust the diagnosis of the first doctor? he wanted to know.

“I looked up my symptoms in a book I have,” I explained. I had bought the huge paperback compendium of medical symptoms a few years earlier but tried to not take it seriously when it suggested I could have a brain tumor. “It’s probably not a brain tumor, but . . . “ I suggested, avoiding eye contact.

“Those books are dangerous,” my PCP snapped. “Everyone comes in here thinking they’re an expert.”

“I know I’m not an expert,” I acknowledged. “But the headaches don’t seem to be connected to my cycle. And they’re so sudden and severe.”

We were at a standstill. I had given the best argument I could come up with and he was unmoved. “Come back if you have another headache,” he said with a shrug.

On January 26, 1997, I had another headache. I was at home with my husband and sister. When I began slurring my words as I argued with them that I was fine, they called 9-1-1. By the time the ambulance arrived, I couldn’t control my arms or legs.

It wasn’t PMS. For two years, I’d been experiencing brain bleeds caused by an arterio-venous malformation (AVM). When it went untreated, the bleeding escalated until I experienced a catastrophic brain hemorrhage or hemorrhagic stroke. The AVM was adjacent to the olfactory cortex, which is why I was having intense reactions to smells.

I spent five days in a medically-induced coma and another two weeks recovering in the hospital and at home. My doctors in the hospital told me that young people who have hemorrhagic strokes typically die immediately or recover quickly. I did both, having a near-death experience in which I left my body and then recuperating enough that I returned to work two weeks later.

My story is a great example of how difficult it can be to get a diagnosis and why I am frustrated that our culture puts so much value on diagnosis. People with conditions that haven’t been diagnosed are considered hypochondriacs, fakers, or snowflakes. People searching for a diagnosis through multiple doctors are called doctor shoppers. But as my story shows, getting a diagnosis can be complicated by many factors:  

  • It can be expensive. Not having insurance kept me from going to a doctor sooner and kept me from finding another doctor when I didn’t like the way the first one treated me, but even if I’d had insurance, co-pays can add up, and insurance doesn’t cover everything. I have a friend who has insurance who was recently diagnosed with autism; their insurance doesn’t cover autism evaluations, so my friend had to pay out of pocket.
  • It takes time. The appointments themselves take time; my recently-diagnosed friend, for example, had to take a full day off work for the autism evaluation in addition to having multiple one- and two-hour sessions with the evaluator. Sometimes simply locating the right doctor to see takes a long time, or symptoms may show up sporadically and seeing a doctor when the symptoms aren’t present makes it harder to describe them.
  • Doctors don’t typically have time for or interest in the kinds of in-depth conversations that many diagnoses require. The two doctors I’ve had experience with who entertained in-depth conversations typically ran two hours or more behind schedule, which makes appointments with them harder to book and take more time.
  • Patients don’t describe what they are experiencing in language doctors are trained to expect. The ludicrous “pain scale,” for example, assumes everyone experiences pain the same way. When I was trying to get my daughter diagnosed with asthma and I said she was wheezing, the doctor said “wheezing isn’t what people think.” Later, after my daughter was diagnosed with asthma, the doctor admitted that my daughter wheezed and said that my use of the proper term was unexpected enough to throw her off. WTF? Using the wrong term is a problem and apparently using the right term is also a problem.  
  • Medicine is an evolving field. Doctors don’t know everything and there are many aspects of our health that are misunderstood or barely understood. For a thought-provoking discussion of where medicine might be headed, I recommend Peter Attia’s book, Outlive.
  • Patients are socialized to not disagree with doctors. I’m an assertive, strong-willed person, and I often feel internal pressure to not push back against what doctors are telling me, even when I know they are wrong.
  • Oppression is systemic. Women, people of color, and people with disabilities are already disadvantaged, but then factor in that most medical research assumes a male, white, non-disabled patient and accepted lists of symptoms and treatments may be wildly inaccurate.

Next week, I’ll talk about how you can support a friend who is trying to get a diagnosis.

Aging, caregiving

How to Have a Conversation with Someone Who Has Dementia

3 Comments

I’ve recently spent time with two elderly people who have dementia. Shawn is in the early stage, still able to live alone and take care of himself, although he is forgetful enough that he isn’t able to manage his finances and other personal business reliably. Susan is no longer able to live alone, forgetting to eat and bathe if someone doesn’t remind her.

When I was a kid, one of my grandfathers had dementia, although at the time, we called it “senility.” He often confused me with my mother or my mother with one of her siblings. He typically knew we were his relatives, but he had a hard time pinning down which one. It didn’t bother me at all because whether he knew who I was or not, he was genial and told good stories and sometimes gave me a dollar for ice cream (which was enough back then). I hadn’t known him before his dementia, so for me there was no loss and he just seemed like a happy—if confused—old man.

As I got older, I began to understand the losses people with dementia experience. Susan and Shawn have both expressed how frustrating it is for them to not remember things. They both often lose track of a conversation and will say something like, “What were we talking about?” or “Why was I telling you that?”

Susan recently described one of her childhood homes to me and then asked why she was telling me about it. “I asked you where you grew up,” I reminded her. She blinked at me blankly, clearly having no memory of me asking her that. “Oh,” she said, looking embarrassed.

In the past, I might have been tempted at that moment to either give her a more detailed recap of our conversation or to try to comfort her with a vague statement like, “I forget things, too” or “It’s ok, it wasn’t an important question.” But neither response would have been helpful.

The more detailed recap would likely not have helped her recall the conversation, which didn’t make its way into her short-term memory, and the details I provided might have just confused her more. The vague statements may have come across as condescending or patronizing or, worst of all, lies.

What I do now is remind myself that the purpose of the conversation we were having wasn’t to have a conversation; it was to connect. The information exchanged is irrelevant. Her remembering the conversation would matter if the information was important, but it isn’t. The connection is what matters, and so the way I make her feel is where I put my focus. If I make her feel like she is being patronized or lied to or placated, our connection will not be nourished.

So when she looked embarrassed that she forgot the conversation we were having, I put my hand on hers, made eye contact, and said, “Do you want to tell me more about where you grew up?”  

My intent was to make her feel valued and interesting, and I think it worked. She told me several more stories about her childhood. When she said she hated being so forgetful, instead of brushing her concern aside, I used an active listening strategy to acknowledge her worry, saying, “It sounds like you are really frustrated with your memory. Do you want to talk about that?”

She did. She only said a few sentences about it, but when she was done, she thanked me. I think pretending someone’s dementia isn’t real can make the person with it feel unseen and that me giving her an opportunity to talk about it made her feel seen. That’s connection.

I take a different approach with Shawn. He is more likely to repeat stories or misunderstand or misremember events. He gets very agitated about the things he misunderstands. He recently became convinced that he has to collect the serial numbers of all his appliances or they’ll be repossessed.

When he told me he couldn’t find the serial number on his hot water heater, I kept myself from saying, “Nobody wants the serial number on your hot water heater!” Instead I asked a simple question: “Who needs the number?” He thought it was the bank. I considered explaining that a bank wouldn’t be interested in his hot water heater’s serial number, but anticipated that could lead to an argument, with Shawn trying to convince me that the bank did want it and me trying to convince him that the bank didn’t want it. An argument wouldn’t do either of us any good.

In this situation, my purpose was to calm his worries. I wasn’t sure how he got the idea that the bank wanted this list of numbers. With Shawn, I try to ask very simple direct questions and I couldn’t come up with a simple direct way to find out what his worry stemmed from, so I asked a different simple direct question: “Would you like me to talk to your daughter about this?” He said yes and let it go.

With both Susan and Shawn, I try to ask questions that do not rely on short term memory, like “How was your day?” or “What did you have for breakfast?” Instead, I ask more open-ended questions that prompt them to share whatever is on their mind. “What’s on your mind today?” is my favorite. I also like, “What are you thinking about?”

Aging, Buddhist life

Embracing Aging

1 Comment

This month I’ll turn 55. I hated birthdays as a child because of family dysfunction, but after my stroke when I was 27, birthdays finally felt meaningful. Making it to 28 did seem like something to celebrate. Now I celebrate all birthdays with gusto—mine as well as those of other people. So much can happen in a year and I love taking the time to reflect on that and appreciate it.

Even the difficult events and developments of a year can be seen as milestones worth savoring. Living three years without my husband is a grim milestone, but it’s also motivated me to explore being a hospice volunteer and becoming a living kidney donor, two things I’m very excited about. I’m proud of the ways I’ve grown out of necessity in my 55th year—for example, taking “date night dancing” off my calendar and reframing my relationship with my house. I don’t regret the growth, despite it all coming from adversity.

Aging means facing adversity. There’s no way around it; with aging comes loss—loss of relationships, loved ones, ambitions, and more. Sometimes because of those losses, we grow. Other times, the losses open up opportunities. Other gifts of aging come simply with age itself.

When I hit 47, the age my mother was when she died, I thought about how I was having experiences that come with age that she never got to have, like having a relationship with my teenage daughter. When my sister and I traveled together, I did so with the knowledge that my mother and her sister never got to do that. When I had my first hot flash, I laughed out loud, thinking, “Well, Mom, you never got that treat, did you?”

Once my husband died at 61, the lesson was sharpened: aging is something not everyone gets to do. The aspects of aging I might have complained about in the past now take on a different meaning: they are things he will not get to do. It’s easy to think of aging as a series of bleak losses. Our independence and health may ebb away or disappear suddenly. Loved ones continue to die. With those losses, though, we may find unexpected spaciousness.

I don’t mean that we ever stop missing or loving what we have lost, but that in addition to those losses, there are some gains. And those gains can be appreciated and even celebrated. I welcome my new interest in hospice work, which feels like a calling.

I’m trying to approach aging in both a practical way—it will happen whether I like it or not, so might as well make the best of it—and a Buddhist way, which is to reduce suffering by letting go of attachments. For example, when I recognize myself feeling attached to things my younger body could do easily that are now not so easy, I try to be grateful for the ease of the past rather than angry about the loss. Anger about the loss assumes I have a right to hold on to that ease. But it was temporary, like everything.

I do enjoy many aspects of aging. Feeling less pressure to please others is quite liberating. Being comfortable in my body, familiar in a loving and appreciative way with its quirks, is lovely. I wish my husband had gotten to experience more of aging’s rewards.

Many of the wonderful gifts I am experiencing with aging are available only because I’ve suffered losses. Several of my most cherished relationships deepened with my husband’s stroke and death. The older we get, the more likely it is that we will experience loss. Every loss will hurt—I don’t think that ever stops—and also present opportunities to connect with others.

The loss that comes with aging also provides motivation to reflect on what matters. I have clarity today about what matters that I couldn’t have had earlier in life simply because it took me 55 years of history on this planet to get there. That clarity was earned.