What’s the deal with haircuts?

May 28, 2020

I ask this in all seriousness: why are people risking their lives for haircuts?

If you live in another country, you might not know what I’m talking about. Here in the U.S., businesses are opening up again. In many states, hair salons have opened, and people are flocking to them. In my state of Massachusetts, that is happening this week. Even though hair salons pose a higher risk than many other businesses, they are among the first to open because of public demand. Reopening is happening based on politics, not science.

I can’t understand why people are running for haircuts. They celebrate on social media, “Yay, I booked an appointment!” I don’t get it.

To be fair, I have never been as fashion-conscious as most. Still, I would love to get my haircut. I just don’t think it’s worth risking my life or the lives of those with whom I come into contact. Why are people acting like it’s so urgent? Why not wait?

Obviously, I would love to go out. If it were safe to do so, here’s what I would love to do, in order of preference:

  1. Hug my parents.
  2. See my physical therapist.
  3. See my occupational therapist.
  4. Get some needed blood work.
  5. Visit with close friends.
  6. Take a walk without worrying about being too close to people.
  7. Pet every dog I see.
  8. Buy my own groceries (especially so that I can manage my food restrictions better.)
  9. Visit with my parents. Yup, they definitely deserve to be on this list twice.
  10. Travel. Preferably to someplace on the ocean. (Even if it were only an hour away.)

Getting a haircut isn’t in my top 10. I doubt it’s even in my top 20. Yes, I’d love to get my hair cut, and if it were safe, I would probably plan to do it in the coming weeks, but it’s far from a top priority. So I just don’t understand the obsession. I’m sure that some people feel that it’s safe (at lease for them.) But what about everyone else? Can you explain it to me, because I would really love to understand.

Meanwhile, have you thought about your top 10 priorities for when those things become safe? Or even your top 5 or top 3? Please share as many as you feel comfortable sharing!

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

How to value our lives

April 26, 2020

With hospitals becoming overwhelmed with COVID-19 patients, choices have to be made. Who will be treated first? If there aren’t enough ventilators for everyone, which patients will get one, and which won’t? This is a difficult conversation to have. Unfortunately, many places are putting policies in place which devalue the lives of people with chronic illnesses.

Part of the rationale is that people with certain medical conditions will take more care than people who are otherwise healthy. I understand that spending 10x more hours on 1 patient means that others will receive less care. Another part of the rationale is that the focus should people in the patients with the greatest potential health outcomes. If the choice is between saving the life of someone who is 70 or saving the life of someone who is 30, this reasoning says the 30-year-old should be saved because they are likely to live longer than the 70-year-old would, even if both recover fully. And if two 30-year-olds need treatment, one with a chronic illness and one without, the guidelines say to treat the one without chronic illness first. In fact, a ventilator may be taken away from the chronically ill patient and given to the otherwise healthy patient!

This is where these conversations often quickly devolve into which lives are most “worth” saving, both amongst policy makers and amongst everyone else. I have a lot of issues with this. Yes, I have chronic illnesses. Yes, my care could be more complicated than the care for someone who has no chronic illnesses. But does that make my life less worth saving? Does that make me a less valuable person?

In the chronic illness world, we say that our productivity does not determine our worth. That is so true. I’m biased, of course, but I think my life has a lot of value. I have not had a full time job in more than 8 years but, contrary to what many believe, that does not mean that I haven’t contributed to society in that time.

On a smaller scale, I am a good friend and daughter. I provide advice, let loved ones cry on my shoulder, celebrate good times, and more. I also do volunteer work in formal settings and provide help to many people in informal ways. (So many friends and friends of friends have sought my advice on how to approach doctors, how to research health problems, or even how to fix a computer problem. Earlier this month I even helped a couple of friends do their taxes.) I have written a book about chronic illnesses, I stop to hold open the door for strangers (pre-pandemic, that is), and I do random acts of kindness (like when a kid at the convenience store could afford the food he’d picked up, so I paid the balance – again, pre-pandemic.) I write this blog, which I believe helps people. Does it change the world? No. Does it change some tiny part of it? I hope so.

Why is all of this considered to be worth nothing simply because I don’t have a job? Infuriatingly, people are arguing that’s the case.

And what if you can’t do any of the above? Your life still has value, and you deserve to be treated as such. These are just examples from my own life. I’m sure you can offer your own examples, past, present, or aspiring to in the future.

What’s more, why should someone be treated as “better” because they are “healthy” and work full time regardless of other factors? Is a CEO who earns millions while harming others somehow superior? What about people who are racist or homophobic but work full time? What about people who steal or assault others? What about those who are just plain mean? Why is working at a job so often a litmus test, while these other factors are completely ignored.

To be clear, I am not suggesting that patients must pass tests to prove they are “good” people before receiving treatment. I am simply pointing out that there are many factors that *could* be used when the conversation turns to who is most “worth” saving, yet so often people talk about folks who receive government benefits and who do not work at jobs as having less perceived value. This hurts. They are saying that I have less value. They are saying that people I care about have less value. They are saying that we should be allowed to die so that someone else might be saved, and that this choice is being made solely due to our having chronic illnesses.

That is why I am standing up today to say that I have value. And so do you.

4 Comments | Frustration, Healthcare, Politics, Rants | Permalink
Posted by chronicrants

Changing the subject

April 23, 2020

All roads, and conversations, lead back to coronavirus. That’s how it feels these days. It’s exhausting.

Even the things that aren’t explicitly about cornavirus end up being related. Someone asks what I did with my afternoon. I made masks. I ask them about their weekend plans. They can’t go out, so they’ll be working on a jigsaw puzzle. I suppose it’s inevitable that when our lives become so collectively upended, we’re going to keep talking about it. Of course, for those of us with chronic illness who know that family and friends get tired of hearing about our illness, this feels a bit hypocritical. But I hope that it leads to more compassion going forward.

Personally, I find it stressful to be constantly focused on the pandemic, so I handle it in the best way I know how: I change the subject. I ask what books they’ve read, what movie’s they’ve watched. I ask about their job, about their kids, about the weather. I tell them about something interesting that I read or did.

Sometimes a subject change isn’t enough. They keep coming back to the big C. More than once, I have explicitly told someone, “Talking about this is stressing me out. Do you mind if we talk about something else?” If that doesn’t work and they keep going back to it, or if there’s a group of us talking, I’ll say, “I can’t handle talking about this right now. Let’s talk another time.” Is it rude? Maybe. I try to keep it light, but I can’t control how someone else takes it. And at the end of the day, my own mental health is important.

Some people feel the need to talking about the pandemic and our collective isolation. I get that. For them, talking about it is helpful. It’s a way to vent. For others, it becomes an unhealthy obsession. Either way, it’s not healthy for me to talk about it. Oh sure, I discuss it here and there. It’s hard not to. But when I feel myself being drawn in, feeling stressed, or otherwise responding badly, I pull away. I change the subject.

Maybe you’re someone who wants to talk about this situation constantly. Maybe, you feel the need to discuss it about 99% less than you currently do. Likely, you fall somewhere in the middle. Regardless, I encourage you to figure out what your sweet spot is, then figure out how to reach it. It can be difficult to finesse conversations. I get that. It can’t always be done, like in formal settings when the manager says, “Let’s all go around the group and talk about how we’re doing before we start things.” I understand why they do that, but it stresses me out and I wish they wouldn’t. Sometimes I leave the conversation. Most of the time I stick it out, and that’s why it’s more important than ever that my social conversations remain social and not stressful. I hope that you can find a way to get the social conversations that you need as well.

What have your conversations been like regarding the pandemic? Have you found a balance that works for you? Would you like to discuss it less or more? Please comment below and share your perspectives and experiences!

7 Comments | Decisions, Expectations, Frustration, Rants | Permalink
Posted by chronicrants

When the solution becomes the problem

March 31, 2020

How do you handle fear? It’s one of the most basic human emotions, and something that we all experience from time to time. Right now, I would guess that more of the world than usual is feeling it on a regular basis.

I don’t know if there’s a “right” way to handle fear, I only know my way: planning, control, and facts. When I’m scared about a new medical test or a current flare or even something not health-related, I deal with it by focusing on the facts, and making plans for what might happen. That allows me to feel in control, which in turn reduces the fear. It’s not perfect, but mostly it works.

Right now, that’s not possible. We have few facts; this is a disease that didn’t exist in humans just a few months ago. The facts that we think we know, keep changing. It also depends on which experts we ask.

Making plans makes things worse. One downside to being a planner is that I’m great at looking 10 steps ahead. I read a lot, so I understand a lot about the world, not just in terms of the pandemic but in general. On top of that, I’m smart. I’m also a logical thinking, very left-brained. Put all of that together, and I have some very clear ideas about where the world might be headed. I have multiple scenarios in mind, based on what actions are/aren’t taken and what so-called facts turn out to be true or false. None of them are good, though some are worse than others. Unfortunately, so far my predictions (made 2 weeks ago) have been accurate.

Not only is making plans very difficult, but there’s another wrinkle: they don’t help. There is absolutely nothing I can do to make the situation in the world any better. There is nothing I can do to make it so that I can sooner see my family or my friends, go out socially, date, have sex. Nothing.

The best I can do is make plans to keep myself alive and healthy. So far I am doing that through day-to-day actions. There are no long-term plans to be made. I just have to keep doing what I’m doing: staying in my apartment, carefully cleaning the groceries that my neighbor brings to me, leaving my mail to sit in the corner of my home for a week (I’m cautious and also not that interested in the mail.) My “plans” involve planning meals, ordering extras of my prescriptions in advance, choosing ebooks to download, and texting friends to stay in touch. Those are not long term things.

Looking at “facts” is not only unhelpful, it’s incredibly stressful. It makes me feel a lot worse. Ditto for making plans. I never tell anyone my predictions because I don’t want to upset anyone, but they aren’t great. I hope I’m wrong, I really do. But in the meantime, having those thoughts in my head only makes things worse. Even as I type this, I am being careful not to think about anything in detail.

So what’s the answer? For me, it’s focusing on the day-to-day. As a planner, that has always been incredible difficult. I thrive on thinking about the future, not only to handle fear, but also to increase excitement about fun things to come, to work out solutions to problems, and more. Avoiding thinking about the future is taking a real effort.

I like reading the news, but right now that’s stressful. Still, I don’t want to avoid the world, and there are other things happening. So I am reading the headlines every day, and trying to only read articles that are not pandemic-related. I am not succeeding 100%, but the reduction has still helped immensely.

When family and friends talk about the pandemic, it’s hard not to get drawn in. I have always been political, so it’s hard not to get sucked into conversations about the way our politicians are handling things. But since I hugely disagree with almost everything they are doing, yet have no ability to change it, this upsets me again. Whenever these topics come up, I try to change the subject. Again, I do not succeed 100% of the time, but any reduction is helpful. I am trying.

Focusing on the day-to-day can be especially hard when so little else is happening. When I talk to someone and ask, “What’s new?” they don’t have much to say. I am trying to focus instead on question like, “What have your kids been doing to stay busy?” “What are you reading right now?” “What shows or movies have you been watching?” It helps a lot to have something else to talk about, and it gives me ideas of shows and movies to watch. For my part, I tell them about the books I’m currently reading, the bird that’s building a nest outside my window, or anything else I can think of on a neutral topic. I ask about their families and tell them about mine.

This is hard. There is nothing about this situation that is easy for anyone. I am alone, and not being around other people is hard. Others are with families that are crowding them and they need time alone. Yet others are in unhealthy home environments are need to leave but can’t. We are scared. Kids aren’t learning. People are losing their jobs or becoming overworked. There’s a lot of stress out there. So yes, it’s damn hard.

That’s why I am focused so much on taking it one day at a time. It doesn’t fix anything in the long term, but it makes this manageable for me in the short term. For now, that needs to be enough.

And one more thing: when I need to, I have a good cry. Because that’s ok, too.

Leave a Comment » | Expectations, Frustration, Isolation, Rants, Raves, Unpredictable | Permalink
Posted by chronicrants

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