I’ve had this thought floating around in my head for months, but had great trouble turning it into a readable piece! After recent events (December 22 to be precise) I feel I can better illustrate the concept. What happened? My medication stopped working. I’m faulty. Action had to be taken. Right on Christmas.
Fair warning: I might be the only chronically ill person who feels like this. But I actually doubt that. Often when we think “it’s just me” we find out it isn’t “just me” at all. But it is something no-one talks about. I will primarily use myself as an example because I don’t want to speak for other people – so please think about situations I describe in relation to other chronic illnesses. The circumstances may be different, but I suggest the feelings are similar. Please share your perspective in the comments!
Many chronically ill people are single: this is where the “selling a faulty product” comes in. Some will have been single when the disease first made itself known. Others may have become single as a result of their illness. Illness place stresses on relationships and some fail as a result.
I’m NOT suggesting any of us, especially me, want to get married. Or even live with anyone. Living alone has benefits, trust me. Younger chronically ill people may have a different perspective on that, but I’m not in my twenties anymore! Companionship would be nice. A friend with benefits, perhaps. Just because we are sick, doesn’t mean we suddenly lose the desire for intimacy or love.
Most chronic conditions come with complications. At one end of the spectrum may be a Type 1 diabetic whose condition is so well controlled you’d never know unless you were told. At the other end of the spectrum we may have a person who is bedridden. Along the spectrum some will have clearly visible indications of unwellness: a walking stick, a wheelchair, a walking frame. Some will be like me (at the moment, anyway): my condition, psoriatic arthritis, is invisible. Unless I tell someone, that person will have no idea. Many chronic illness are like that. But I know I’m a “faulty product”. At least that is how I see myself.
Don’t get me wrong – I’m pleased with what I achieve in managing my health. I know and completely accept my limitations. A note for newbies to this life: acceptance takes a while. A few years in fact. But you will get there! Even so, I know I’m a bit like a car with worn brake pads or a shirt with a missing button. I, therefore, feel I should be open and honest about my limitations. But when, exactly? And no, there is no discount price involved!
Let’s take a closer look at the rose. In fact, let’s take a look at two images of the same rose.
Some days, most days, I like to think I am the rose on the left. But some days I am the rose on the right. Unlike the rose, which does not revert, I can be either conformation at any given time. Most chronic illness people will nod knowingly. Healthy people with no experience of the chronic world will be more inclined to go “WTF?”
If you “bought” the rose on the left, but woke up next to the rose on the right, what would be YOUR reaction?
As I have discussed before, chronic illness is relatively new to the human race. Many people struggle with the concept that we are incurable, most of us are not going to “get better” next week, next month, next year or, in fact, ever.
If we contemplate dating, when do we tell the “customer” that we’re faulty? Even bigger question, how much do we tell them and at what point? Up front and perhaps scare the living daylights out of them? Later and risk them feeling we weren’t sufficiently open and honest initially? Or…..is it easier to just put ourselves on the shelf? Not for sale. Return to manufacturer.
Dating a healthy person sounds good on paper, but are they going to understand? Are they going to be able to cope with the challenges we face on a day-to-day basis? Dating another “sickie” perhaps has the benefit of understanding (hopefully), but do you effectively now have double trouble? Now you have two people with challenges. If one needs to walk lots and the other needs to rest lots, how is this going to work on a practical level?
As regular readers know, I recently had some flares that saw me in ED. We put that down to an infected tooth (since extracted). However, I didn’t really get better. Three days before Christmas, I called my rheumatologist. Fortunately, I’m not cooking Christmas Dinner for anyone: my daughter and her husband live in South Australia and are coming over the first week of January. If they had been here and I had been hosting, I would have had to cancel – three days before Christmas.
We can make plans and then have to cancel at the last minute.
It isn’t just about plans and activities though. It is about the other things that go with our diseases/illnesses that healthy people may have no knowledge or experience of. Here is a SHORT list of just some of the more common issues chronic illness people may be dealing with, aside from the obvious mobility aids we can all clearly see.
- Patient administered injections (some find this freaky)
- Skin rashes, which may lead to the next item
- Icky creams that end up on bed linen and don’t feel very romantic
- Rules around eating times driven by medications
- Continence issues
- Mood swings, weight fluctuations etc due to medications
- “Brain fog“
- Pain – chronic, periodic or unpredictable
Some patients are stable. A rheumatoid arthritis patient told me recently he’s been on the same dose of the same medication for ten years and basically lives a normal life. I’ve just failed my sixth medication in eight years. I am in a lot of pain as I write this, waiting for a new medication to kick in.
I tell myself that two perfectly healthy people could start dating and some time later something occurs that disrupts their lives completely. The story of Sam Willoughby’s BMX accident is a classic example of such a situation. This is a great love story, do read it!
The pain is still etched on Sam Willoughby’s face.
Not just pain.
“BMX was my life,” Sam says while looking straight down the camera at the start of Ride, an ABC Documentary released on Sunday.
“Until it wasn’t.”
The accident that left Sam, a two-time world champion and Olympic silver medallist, paralysed from the chest down, happened on September 10, 2016.
Just 22 days earlier, Sam had been racing in the final of the Olympics in Rio de Janeiro.https://www.abc.net.au/news/2022-11-21/ride-documentary-sam-willoughby-alise-post-bmx/101559036
In contrast, I could look at my situation as a positive: after all I know what my situation is. Or do I? Do any of us? Many of these diseases are progressive. Many have comorbidities which in some cases may be worse than our first condition, IF we develop any of those conditions on top of the one we already have.
I may have worn brake pads now, but the motor could blow up next year.
I’m a fiercely independent person. I’m not suggesting this is necessarily a positive thing, it just is what it is. Would it be nice to have someone spray this icky foam on my back, where I can’t reach? Sure it would. Then my mind says “Who’d want to do that? Someone with a controlling tendency?” It is a risk. Am I overthinking it? Probably. Maybe. Maybe not.
Interestingly, my GP has broached the topic of singledom with me, yet my psychologist never has! My psychologist talks about “expanding social circles”, very generic. My GP is much more specific (and trust me, I do mean “specific”), bless her. I would have expected it to be the other way around.
There are no manuals about how to navigate this particular aspect of being chronically ill. Nobody talks about it. At least not that I’ve seen in the readily available literature. There may be a scientific study somewhere, if you know of one, please share the information! I think the silence is born of what I see as the fact humans have not yet adapted to this fourth state of health – chronic, not curable. We haven’t developed social protocols to deal with the disclosure or information sharing.
It would be so easy if we could get our primary health care provider to write a letter, like they write a referral to a specialist, outlining the practicalities and the patient just hands it over (or there is an exchange of such letters) at a socially pre-determined appropriate time (first date? second date? before sex? I don’t know!). Then I’d feel I’ve been open and honest, the ball’s in your court now.
I don’t have a solution for this. I am hoping society can have more open conversations about the situation. So many of us live our lives hiding our conditions where possible, as I discussed in You Look So Healthy:
I asked two members of the support group if they would permit me to use photos of them looking absolutely stunning to illustrate this article. Both declined because the state of their health is not public knowledge – they are concerned about the impact being on a public website such as this may have on their jobs. One in particular is striving for remission and may be able to put all this behind her.You Look So Healthy!
Now I am retired, I don’t have to hide for fear of losing my job. So I can pose the difficult questions, write about the stuff no-one talks about.