Episode 250 : The King of England walked into a church on Easter… and the burden of looking well.

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Last weekend I was in the car with my husband listening to the news and heard the King of England was up and walking around in public on Easter Sunday and it pissed me off…

Let’s talk about not needing to look sick to be sick.

My husband and I were taking a long drive back home after visiting family for the holiday weekend. We exhausted our options of things to listen to and conversations to have so we turned on the news station and found the anchors having a conversation about the King of England. 

If you don’t know he has recently been diagnosed with cancer and has been out of the public eye… as he should be able to. 

As they started to talk about the King performing his public duties for this holiday I was just passively listening, wondering why half the cows in the field we just passed were laying down while the other half just stood.

I mean really, are some just more tired than others? Don’t they all live the same existence on the same farm? 

Anyway, what caught my attention was when one of the news anchors said “He looks just fine”

What instantly came out of my mouth was… yeah what you’re not seeing is the 10 hour nap he’ll have to take to deal with going out in public so all of you dip wads can see he’s still alive!

There is a perception problem concerning people who are living with chronic illnesses and what they’re supposed to look like to people who don’t understand what it means to have to live with cancer or many of the other illnesses you  quote unquote GET TO LIVE WITH. Things people don’t understand when they’ve never heard a Dr say… this isn’t what’s going to kill you but you’ll have to live with it for the rest of your life. 

If this is the first of my episodes you’ve listened to my husband is in this category. He has cancer that he has to live with. It’s seen as a chronic disease just like so many other people who are fortunate to not be killed by their cancer or chronic illness. 

The way it is always stated is - we should feel lucky.

Even saying that sentence makes me cringe just as it would for many other caregivers who care for people who have a chronic illness that isn’t debilitating 100% of the time. Because sometimes the gift feels like a curse and when you are surround by people who don’t understand that aspect you don’t have a lot of outlets to share and voice how you feel. 

When cancer doesn’t kill you. When a chronic illness doesn’t kill you but you aren’t cured of it that doesn’t mean you get to live as a normal human being who is disease free. 

However, just like the King of England, you have moments of your life when you feel forced to act like everything is ok. The disease doesn’t exist. And when done at the wrong time, in the wrong way, it can take days to recover. 

WE don’t know what type of cancer the King of England has. Whenever a person of status is diagnosed usually there is a big part of the cancer community that is interested in knowing what kind so they can feel a connection with that person or hope that person would use their position to bring awareness to the specific type of cancer they have in order to motivate people to learn more about it. I find it curious they would let us know he has cancer but then out of the effort of being private don’t share what type of cancer he has.

But when someone has been diagnosed no one else “deserves” to know what that diagnosis is or that it even exists.

My problem isn’t with the King having cancer… my problem is with the fact that the whole world saw this older man diagnosed with what could be a terminal disease, showing up essentially for the world to see he’s ok when he almost definitely is not. 

So now what is stopping a non royal human being living with a disease from being told - why can’t you go to work right after chemo? Why can’t you clean your house? Why can’t you parent? The King of England has cancer and he looks just fine. I saw him walking around on Easter Sunday.

If you don’t have a visible scar, the loss of a limb, have to use a wheelchair or otherwise have an outward showing of your disease, then people just assume you should be fine. 

Which puts the burden on the person who is sick and the people caring for them. 

It’s a PR issue, really. But it’s a difficult task and unreasonable ask for a person who is sick to show the world how they really feel, what life is really like for them when they aren’t in public and why they can’t do a lot of the things their social circles feel they should be able to do. 

If a person is in surgery for 14 hours to remove a tumor it can be assumed recovery will take time. Not just in the hospital but once they’re at home. Not only physically but emotionally as well. 

If someone needs to have a week of chemotherapy and it doesn’t make them lose their hair that doesn’t mean they are supposed to be ok just days after they are done. 

If radiation is done on a part of the body that is normally covered by clothing or if whole parts of a body are removed there is an emotional and body image journey that person has to go through even after the pain is gone. 

Then let’s talk about how quickly things can go wrong as a Dr tries to find the right medicine dosage for your loved one. 

Chronic illness has a big quality of life issue that no one really talks about. So when a person with a chronic disease doesn’t look sick it’s hard for the outside world to recognize how much like crap that person may feel at any time. 

There is a disconnect between the perception and the reality. 

And in the middle of it all are the people who are caring for them. 

It’s so easy for people who know me to forget that I am my husbands caregiver, especially at times when he needs less support. However, a caregiver for someone working to live with an illness is always a caregiver.  And if the person they care for doesn’t look ill or isn’t bed or wheel chair bound it can be difficult for other people to offer support in the way that would help. 

If someone is caring for a person who, let’s say, has cancer and taking an immunotherapy drug their caregiving can be very demanding as they try to help their loved one balance the effects of the drug with the quality of life they want to live while also trying to keep a cancer from growing. A lot of these drugs can make a person feel exhausted which on its own can be problematic to treat and live with. 

Being a caregiver for a person who can pass as being, let’s say, ok, is difficult because gaining the support from your friends, family and others in your social circles can require you to have to advocate for yourself more than you should. Qualify why you can’t go to the event or make your special dish because you’re exhausted and then have to explain and remind them about your caregiving and basically the reality of your life they just fail to understand. 

When people see a person they know that has cancer at the grocery store with their loved one they most likely think ah they’re looking good but what they don’t know is that it took them all day to muster up the strength to get out of the house or to curb the nausea or let the pain subside and being out for that half hour will make them have to go home and sleep, not because they want to, but because they have to. 

So when the kind of England goes out on Easter Sunday and everyone comments on how good he looks it frustrates me because he’s trying to show the world he’s ok when everyone who cares for a person with a chronic illness knows how unfair it is for him to have to do that. They know how much more work it probably took him to have to recover afterward and how strongly it helped perpetuate the issue that people have to look sick to be sick. 

I can tell you that when people tell my husband he’s looking good it stings a little. It isn’t usually done intentionally but every time I hear that sentence what I hear and what my husband hears is… Guess you’re ok now. Guess I don’t have to worry anymore. Guess I can forget you have cancer. 

You don’t look sick. So you must not be sick.

Some days it takes a lot for me to blurt out “but he’s not ok today. He’s been feeling like crap the past week. He has cancer scans in two days and it’s driving us both crazy.”

Unfortunately what I actually do is just smile and change the subject. 

Because, like most of you listening, I get tired of trying to get people really see the cancer standing next to us. Especially on days when it’s looming over us menacingly, making the hair on the back of our necks stand up because we can feel it there, just waiting for a small break to jump in and grow. 

You can’t explain that feeling to someone who hasn’t felt it. You can show an outward affect to living that way. And quite frankly somedays we try to ignore it’s there.

I’ve started to think that we should care less what other people think or believe to be true about how we live and demand more.

Encourage our loved ones to take that FMLA leave when they need it and do the same yourself if you’re working for a place that offers it as a benefit. 

Ask people in our lives to help us. The fact that your loved one has been sick for a decade doesn’t matter. Starting now is better than not getting help at all.  

Share with the people we talk to on a regular basis how things are for you just as you would share how you burnt the chicken for dinner this week or saw a migratory bird on your walk the other day. 

Take tiny steps towards being unapologetic about your caregiving. 

Demand to be seen by actually showing yourself. 

So often we hide our caregiving, not out of shame but exhaustion. 

We don’t share because we don’t want to have to deal with any judgement. 

We don’t ask for help because over time we’ve learned that we can’t trust people will actually show up. 

But what if we lift the veil a little - with the people close to us? With our co-workers? 

What if we shared with people in our lives because without them knowing more about this part of us they really don’t know us at all. Doing so with the understanding that we can’t control how people react to what we say to them but we do have the ability to set boundaries on how we chose to be treated. 

What if we spent some time sussing out the small things people can do, strategically based on their strengths and interests that would really lighten the load but wouldn’t break you if they didn’t show up. 

What if you took up more space? 

It isn’t every caregivers job to try to get people to understand what their lives are like. You aren’t responsible for making sure strangers know how difficult caregiving can be. 

But what if we showed up more to the people who actually care?

Because the King of England isn’t the first and won’t be the last celebrity to show up in public and “not look sick” even though they are. 

People who don’t have a connection with a caregiver or a person with a chronic illness will have no idea what our lives are like. 

You can’t change that, nor should you be expected to. 

But just because people don’t understand doesn’t mean you have to live small or feel small. 

If you’re a caregiver for someone who has a chronic illness you are in it for the long haul. And let’s just cut out the noise that comes with that. Gratitude, feeling lucky and knowing it could be worse do not have a place at the table of this conversation because none of that makes it better when you’re up at 2 am wondering how you can continue caring for your loved one for the rest of their life. 

Wishes and changes of mindset have a place in our lives but it does not change the prognosis and quite frankly having days where caregiving feels like a life sentence instead of a miraculous gift is tiring and very real. You don’t need to feel like you have to put those rose colored glasses on to get through it because then you’re just invalidating the real feelings you have.

But at the same time try to not invalidate the importance of what you do when you are out in the world. 

Knowing that people don’t really understand what your caregiving is like or how it is for your loved one to live with their disease is actually information you can use. 

Instead of letting the weight of feeling misunderstood wear you down you can see it as your opportunity to inform or let them stay ignorant of what life in your household is like. You distance yourself from the emotional attachment you might have to their perception of what living with a chronic disease should look like and you decide what you want to do with the moment. 

It switches it to, I feel lonely because no one understands me to, they clearly don’t understand caregiving and I don’t feel I have to teach them how their perception is flawed. 

From, I’m not going to ask for that help because they don’t think I need it to, I need the help and I’m going to give them an opportunity to be there for us, if they don’t follow through that tells me something about them, not me. 

The notion of having to look sick to be sick will always exist. 

That doesn’t mean you don’t have the right to be seen and that accommodations should be made for your loved one. 

You don’t have to fight the message, the perception much of the world has on what sick should look like.  But you can show the people around you what living with a chronic disease is like and start to see that their failure to understand you and your family’s needs is not a you problem it’s their problem so you can keep on being the best caregiver you can be. 

Thanks for listening.