You Look So Healthy!

Yesterday a fellow chronic illness patient shared she was in tears. A friend had told her she looked “so healthy”. So why was she crying? Even she was not quite sure, but several of us put our heads together and discussed the situation.

Tell us we look stunning, beautiful, handsome (men are chronic illness patients too), a fashionista even. Please be careful using the word healthy. If you have a friend or family member who has a terminal or chronic condition, perhaps reach out and ask them what compliments are safe. You want to compliment your relative or friend without using a word that can trigger sad feelings. For some it is the word “healthy”, for other patients there may be other words. Perhaps for a man “strong” maybe a trigger. Men – feel free to chime in with suggestions in the comments section!

If I put myself in another’s shoes, a healthy person’s shoes, imagining I know nothing about being sick, I possibly could think, “What would a sick person like to be? Healthy, that is what my sick friend would like to be“. I can see this imaginary healthy me thinking I am giving positive vibes to my sick friend. When I say “you look so healthy” I think I am being complementary. I am hoping to cheer my sick friend up.

However, for many of us sickies (also known as #spoonies), healthy is a bridge too far – yes some of us MAY go into remission or get close to it, but someone saying we look healthy can be a strong reminder we aren’t – and in many cases never will be again. It can hurt.

The word healthy can play tricks on us too. We can feel like you are doubting whether we are actually sick: that can feel as if our illnesses are being invalidated. One thing we need so much is the understanding of our loved ones. If we feel doubt from you, even though you don’t mean it, it hurts emotionally.

“You look SO healthy” can make us cry because we want what we can’t have. No matter how hard we work at accepting our situation psychologically, no matter how hard we work physically at strengthening our bodies to manage the pain (if we can – I am lucky, I can, some can’t), most of us DO NOT like being “sick”. We don’t like not having the energy or mobility we used to have. We don’t like the side effects of the medications we take, or the myriad of potions and lotions we may have to apply. We don’t like having to cancel social events because of a condition flare. I could go on.

In a support group I am a member of I often feel a bit of a fraud – many of the members are much, much sicker than I am. To put that in perspective, this is my list:

• psoriatic arthritis
• hyperactive thyroid, multi-nodular goitre, Graves disease (autoimmune)
• diverticular disease (most of us have some degree of this, by the way)
• sliding hernia
• bulging disc, lumbar spine
• herniated disc, lumber spine
• arthropathy and hypertrophy of various facet joints
• scoliosis lumber spine
• psoriasis

That’s after I’d already lost all the “optional extras” (as one professor put it): tonsils, appendix, uterus, gall bladder.

HEALTHY people will read that list and probably have a reaction along the lines of “OMG, how are you still alive?” Easy, actually, but I’ll get to that! I am one of the healthiest sick people you’ll likely meet and I am well aware of that. That is MY list of conditions – yet compared to many other members of the group, I am in fact “healthy”. I do strength training (I can leg press 160 kg), I swim, I am on NO pain medication. Yet I cannot work full-time, changing the bed linen flattens me, I have mysterious losses of energy unexpectedly, I struggle psychologically to accept I am “sick”. So many chronic illness patients have so much more to contend with than I do.

One member of the group, Sam, suffers spontaneous bone fractures. Can you image that? You are just sitting there, doing nothing, and your pelvis fractures. Or the bones in your feet. That patient cannot go and do what I do, it is just not physically possible for her. Does she look healthy in pictures? Sure – she looks stunningly healthy! Is she how she looks? No.

A new hairdo, a manicure and great makeup can make us feel better, just as it can for a healthy person, yet many of us have a nagging thought in the back of our mind of how long can we manage it? For example, I am losing fine motor control in my hands. My manicured nails are one of my “pick-me-up” techniques.

Yet it is taking me longer and longer to do them, trying to keep my hands steady. What will I do when I can’t do it any more? Pay to have it done? Maybe not – there are all those hidden, unrecognised costs of being sick, you see. One of the reasons I have a partial plate rather than dental implants is even healthy people have difficulty with manual dexterity as they age. Manual dexterity is important in caring for dental implants. With psoriatic arthritis I wasn’t going to take the risk.

I’ve mentioned before the time a co-worker told me not to worry about the calories in a mini-muffin, I’d work it off in no time – ummmm – no, I can’t. Yes, I exercise, but I can’t do the level of exercise I LOOK as if I can do!

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. I mention this to illustrate how society’s expectations can lead us to hide our conditions, keep it secret. Yet in doing so, we may exert ourselves more than we should and hamper our efforts to get well (or slow/halt disease progression), where that is possible.

Michele Lent Hirsch has written a book about being young, sick and female, “Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine,” which came out late last month.

The following is an extract from an interview with Hirsch:

MW: Right. In the book you talk about a job where your boss told you to “leave your cancer at the door.”

MLH: There couldn’t be really a worse reaction. And a lot of the women I’ve interviewed have talked about how they work, just like I did in that job, harder and longer hours just to compensate for what seems like people treating them like they’re not a worthy employee anymore.

And what’s especially horrible about that is, again, women are already getting paid less, getting treated more poorly at many workplaces across this country.

That kind of behavior is only going to enforce women trying to hold it all in.

Patients working longer hours, as Hirsch describes, to “prove” they can cope, are NOT going to be spending the time required to keep their bodies healthy and their conditions under control. They are going to be exhausting a body likely already energy depleted. Remember how I said I am one of the healthiest sick people? But I don’t work full-time, let alone work extra hours because I put my health first.

To my chronic illness readers, please share other phrases you find distressing in the comments. I especially invite men to share, as I don’t have much experience of being a man.

EDIT: A reader mentioned to me “Oh, but you’re fine now!” is something they describe as “That’s the killer”. I agree. No, we are not fine. Even if we are lucky enough to go into remission, we can never stop monitoring, never stop doing all the things that got us to that point without risking a relapse.

A friend of mine is this weekend taking part in a huge walk for Oxfam. Seven or eight years ago she could barely walk to the end of the street. With the right medical treatment her condition is now under control to the point, like me, she looks perfectly normal and does lots of perfectly normal things – like walk for Oxfam. But no, neither of us are “fine now”. We are forever vigilant and can never stop our self-care.

October 28, 2021: Updated with current information.