Why I rarely write about my health conditions

I enjoy writing about a variety of things, as seen by my varied articles and blog posts across the web. This website alone is a great example of the types of things I enjoy writing about, and my website encouraging MultiTalented writers to start and grow a multi-niche writing career is another. But there’s one thing I rarely write about: my health conditions.

There are many reasons I rarely write about this, but the main one is this: I don’t want to be defined by my limitations. I know what they are, and I work around (and sometimes through) them. I rarely talk about my health issues because frankly, they’re not that fun to talk about. And there are so many other things that are more interesting to me. My illnesses are a simple fact of life, and I manage them on a day-to-day basis, adapting as needed to continue living life to the fullest. Unfortunately, I do have to give up some things in my life at times (like triathlons, because running is simply no longer an option).

I also rarely write about my conditions because without fail, when people learn about them, they want to give their unsolicited advice on how to cure or improve them, and it’s tiresome. They may not realize it, but when they tell me how to fix my conditions, they’re in effect telling me that chronic illness is my fault: “you’re dealing with this because you haven’t tried x, y, or z. If you only do this one thing, everything will be fixed.” It’s not fun hearing these, and I wish people would stop.

So that’s one of the many reasons I rarely mention my health. But I wanted to write about this stuff today for one main reason: I do have a number of chronic health conditions, and as I get older, they will only get worse, as most of them are degenerative, and I don’t want anyone to be surprised by the increased number of braces I have to wear or mobility aids I’ll eventually need.

I also wanted to put it on record that I’m not interested in your cure. I’m so tired of people telling me to adopt a certain diet, or do a “detox,” and everything will be just fine. Unless you’re a medical  doctor, I’m not interested, and most people with chronic illnesses feel the same way.

So what are these illnesses, anyway? Here’s what’s been diagnosed:

1. Asthma

Blue ventolin inhaler

 

As a kid, I coughed incessantly at night. After being diagnosed at 28-years-old (after feeling like I was having a heart attack because my chest was so tight), I discovered that night-time dry coughing is one of the main signs of childhood asthma.

It’s too bad it took this long to get diagnosed, but I breathe so much better now. My asthma is pretty mild, but it’s enough to affect me when I’m exercising or exposed to too many irritants (I’m allergic to dust mites and several strong scents; both cause asthma attacks and a worsening of post-nasal drip). I take a daily inhaler for my asthma, and try to remember to carry my rescuer as well.

2. Post nasal drip/environmental allergies

several bottles of nasal spray in a line

This is so disgusting, but too much mucus accumulates in the back of my throat, and the only way to get it out is to snort and spit. It makes for a very disgusting noise, but what can you do. I try to remember to do a nasal rinse every day, and I also take a nasal spray to help with symptoms. When I’m exposed to too much dust or strong scents, my post nasal drip increases significantly, and it’s really uncomfortable. Many strong scents cause problems for me, not just perfume. Many “natural scents,” including some essential oils, cause me both post nasal drip as well as difficulty breathing.

3. Hypothyroidism

human anatomy model

Let me preface with this:

I have a huge problem with how often the birth control pill is prescribed for this, that, and everything when it comes to women’s health issues. Cystic acne? Take the pill. Problem periods? Take the pill. Anything that we don’t feel like investigating? Take the pill. I can’t believe how long it took to get a diagnosis that could have been figured out with a simple blood test a long, long time ago.

Growing up, I was always cold. My friends and family would be walking around in a t-shirt, and I’d be wearing a sweater. I had severely messed up menstrual cycles. My nails were always breaking in 3 layers. My muscles always hurt. And I could go on. But what did the doctor do when I finally gathered enough courage to talk to someone about my extremely heavy periods that would go on forever? Of course, I was given the pill.

Problem is, a problem menstrual cycle is almost always a symptom of something else. And hypothyroidism affects a huge amount of women, with difficult menstrual cycles being one of the main symptoms. It wasn’t until after I got my current doctor that I finally got a diagnosis, and it was quite by chance.

Living with hypothyroidism can be very difficult, but if you take the right dosage of medication, symptoms can pretty much disappear. My body still has a hard time regulating temperature, even when I’m on the right dosage, but now at least my menstrual cycles are more bearable.

4. Osteoarthritis (OA)

wooden puppet hands

I have body-wide, degenerative osteoarthritis, and it started “early.” OA affects my ankles, knees, wrists, fingers, elbows, S/I joint, and spine. At one point, it was suspected I had rheumatoid arthritis, as most OA cases don’t present bilaterally and body-wide. After a positive test, a family history, and most symptoms associated with RA, I was still told I don’t have it. Go figure.

5. Hypermobility

knee braces on woman's legs to prevent sublaxations caused by hypermobility

I am hypermobile in most joints. While some people may think being super flexible is awesome, it’s truly not. My hypermobility is causing more problems as I get older. My hips and knees frequently give out form under me, making me lose my balance and nearly fall. I’m still able to catch myself—for now. My wrist bones often go out of alignment, causing pain. I can put them back in place, for now. Both my hypermobility and my OA cause chronic pain. I rarely have pain-free days, and it’s been that way for decades. I now wear knee braces for long walks, and frequently wear wrist supports to keep my bones from popping out of place.

My son’s developmental pediatrician, after taking an extensive family history for my son, and hearing all my health issues, suggested I ask my doctor about Ehler-Danlos syndrome. But after being told by a doctor that I’ve been “googling” health issues (which was untrue), I was too embarrassed to ask my doctor about a condition he hadn’t yet considered. And that’s sad, but that’s the way it went… Maybe when we come back from this trip, I’ll have enough courage to advocate for my health more carefully. As I read more about Ehler-Danlos syndrome, things do seem to fit, but I don’t want to self-diagnose.

If anyone knows a simple way to get tested for this without a referral, I’m all ears (and I’m all over the US and Canada for a year, so I’d be happy to go anywhere to get tested).

6. S/I joint dysfunction

Part of my hypermobility means my hip bones don’t stay in place. My S/I joint (where the spine meets the hip) is frequently out of alignment. I can feel this as I walk—one of my hips is often way higher than the other. I also frequently feel my hip “give out,” which makes me lose my balance, and is pretty embarrassing. This happens as I’m walking or even just standing. All the physio and exercise in the world don’t fix this problem. The ligaments are too lax, and no matter how much you exercise or how you change your diet (sigh…) there’s no way to make ligaments tighter.

Why am I telling you all this? Mostly to give myself peace of mind when I need to use tools to continue living the active life I want to live (like my wrist and knee braces). Also, so that people understand that if there’s a day or two when I’m not my usual chipper self, it’s probably because I’m having a bad pain day. And I’m also writing this to give support to the invisible illness community. There are many people who look perfectly healthy, but who are struggling with health conditions that make daily activities difficult. Most of these people, myself included, don’t need your pity or judgement, and many don’t even need your support. Most of us are pretty good at finding our own support groups.

What we do need is for you to see us as human beings with interests, dreams, and goals—like everyone else. The reason I rarely talk about my health conditions, either here on the blog or in person with friends and family is simply that. My health conditions affect me on a daily basis, but they don’t need to affect how the world sees me. I want to be known as a dreamer, a multipassionate person, a writer, a mother, a homeschoolernot “the girl with all the health conditions, poor her.”

The health conditions I manage are secondary to everything else, and they don’t really come into most conversations. And finally, for the people who do know about my health conditions or recently learned about them, please, please, please. Stop trying to cure me. You may think that a certain diet will fix all my problems, or that your pain management practices will somehow work for me. That’s not how it works.

We all work differently, our bodies are different, and what works for one person may not work for the next. Most people with chronic illnesses have already spoken to countless doctors and health professionals, and we’re already overwhelmed by treatment options. We don’t want to have to listen to the latest “cure” by lay people. If you want to help friends who are chronically ill, the best you can do is to treat them like people, understand when they’re too tired to partake in activities, and offer practical help when they’re having flare ups. Not sure what practical help looks like to your friends? Ask. 

And finally, remember to not judge a book by its cover. Many illnesses are invisible, many of us fake being healthy pretty well, ambulatory wheelchair users exist, and most of us who manage health problems are just trying to live our lives using the best resources at our disposal. We need love and compassion, not pity or judgement—just like everyone else.

P.S., Surprised that I’m happy all the time while I’m dealing with all this stuff? Don’t be. I could sit and mope about my health, or I could just LIVE. I choose the latter.

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