Chronic illness involves many symptoms and sometimes side-effects too, from the medication we take to help manage them. Yet there some health issues that are still taboo it seems to me.
Sometimes I talk about these taboo on my @through.the.fibro.fog Instagram and the response is always overwhelming. People say that they are glad certain health issues are being talked about, but also that they feel too self-conscious or embarrassed to talk about them to family, friends or even their doctors. I know that I am not alone in trying to hide symptoms as best I can at times, or pretending to myself they don't exist.
I hope that in some small way talking about them here helps to normalise the health symptoms we experience, and feel less alone with them. Because, after all, it is talking openly about issues that reduces stigma and makes it easier for everyone to get the help they need.
While there are many more than in this list, these are five health issues that are still taboo, it seems to me, but I feel should be talked about more, not less.
1. Hair loss and breakage
Hair loss definitely feels like a taboo topic from conversations I have had with others living with chronic illness conditions. It is something people try to hide as best they can, sometimes through using extensions or wigs. Others have said that they only go out wearing a hat to cover thinning hair.
It always feels upsetting to experience hair loss. The clumps of hair in the shower, or falling to the ground when brushing my hair always makes me sigh. Putting my hair up in a top-knot shows the thinning at the sides and I have so many wispy bits from breakage.
Some people though think that it is vain to be concerned about hair loss. I think that is highly unfair. Chronic illness is bad enough without either our conditions or treatments causing a change to our physical appearance. Hair loss feels like a big change, and one that can be so visible.
2. Dental issues
This is something that I am going through right now, as I am in the process of getting dental implants due to missing teeth. For me, it is thought that having Ehlers-Danlos Syndrome is likely the reason for my dental issues (for more info, EDS UK has a good page on EDS and oral and dental implications).
Dental health definitely feels taboo, and I've had heart-breaking conversations with people over their upset at not having 'perfect' teeth. Missing teeth can feel embarrassing at times, and there can be so much pain involved in both the dental issues and treatments and procedures to manage them.
I think we have all seen our fair-share of models with perfectly flat stomachs (and ripped abs too - cue eye roll here) in a lovely little crop top. Women's bodies have of course been objectified, regulated and been the subject of impossible standards for as long as we can remember. A flat stomach is always part and parcel of those impossible standards.
For those with chronic illness, yep, bloating is definitely a thing. It's a frustrating and upsetting symptom for many with endometriosis and other conditions, or a side-effect of medication.
And the thing with bloating is that it can be painful. Really painful. It feels as though my skin is too tight and my insides are somehow trying to burst their way out. On those days a waistband on a skirt or trousers can feel like torture.
Related post: Clothes and chronic illness: comfortable styles and symptom management
4. Acne or skincare issues
Along with having the (impossible to achieve) perfect body, it is always seen as desirable to have perfect skin. And to have pimples and scarring is taboo. Except it shouldn't be. Who has never had a period of skin issues? I'm guessing the percentage is tiny.
Acne can come along with many health conditions such as PCOS and Cushing syndrome, some medications and stress. And many of us with chronic illness live with stress I think it's fair to say.
I think most of us have had days (or weeks, months or years) when skin issues affect our mental health. I know that it makes me feel self-conscious when I have a break-out, whether it is on my face or back. It feels as though people will only notice the pimples and so I cover them as best I can. Yet when I have asked friends, they remark that they hadn't really noticed. Still though, it is never pleasant to have a break-out, it can feel upsetting and sometimes is physically painful too.
If you have skin issues then please do talk to your doctor and ensure that you don't have hormonal issues that need addressing or that perhaps changes could be made to medication if that is the cause.
Related YT video from Shruti of Footprints, No Boundaries: Fighting acne caused by PCOS, endometriosis and Ehlers-Danlos Syndrome
5. Gut and bladder issues
Where to start with gut and bladder issues. From upset tummies to constipation, gut issues can be distressing and painful too. It can stop us leaving the house or feeling very worried when we do. As many people in the chronic illness community have said, we work out routes to and from places so we know where all the bathrooms are.
Neither gut issues or bladder issues are easy to live with. There are so many conditions that affect both, ranging from Crohn's disease and gastroparesis for gut and digestive system issues, to interstitial cystitis to Fowler's syndrome for bladder issues, to name just a few. All those conditions require careful medical care and you may need procedures such as a colonoscopy to diagnose them.
Yet, to talk about bladder issues for a moment, many find them too embarrassing to even talk to a doctor about or pursue medical care. I know of people who suffer in silence despite needing to use the bathroom frequently with urgency and pain, but who feel they don't want to seek medical help.
Some of this reluctance (from conversations) has been because they don't feel able to talk about bladder issues as they feel too embarrassed, and some of it is due to being worried about invasive diagnostic tests. Of course, medical tests are never pleasant, but are often the vital beginning of a process that can lead to treatment that can make such a difference.
If it is taboo that is preventing you from talking to your doctor, please know that they have these kinds of conversations each and every day. The right doctor will talk to you with empathy and kindness and refer you to a specialist if required. And if they aren't kind, then do see another doctor (perhaps ask for recommendations) as so much can be done to help you manage symptoms.
Related post: Bladder instillations: what to expect
Some final thoughts on chronic illness and health issues that are still taboo topics
I know that this only touches a few of the many aspects of chronic illness and health issues are still taboo in our society. There are so many other ways that our health changes our physical appearance, causes symptoms that are difficult to manage and that others deem 'embarrassing'.
I try very hard not to think of my body as embarrassing. It is me. Flaws and all. It brings such positive things, such as being able to see my nieces and nephew, hear the birds sing and taste delicious food. Yet it also brings tough days, and changes that make me feel older than I am.
Our bodies not conforming with the high standards set by others (wrongly) can be such a source of upset. It often feels even worse when those symptoms are the side-effects of taking medication to manage our chronic illness conditions.
Finding community and support with health issues
Social media is given a very bad reputation for promoting unrealistic expectations of bodies. That they should be perfectly in proportion, with glossy full hair, flawless skin and yet of course hairless in other areas. Images of women are slowly changing to be more inclusive and to represent all body types, but far too slowly it feels.
Yet social media in the chronic illness community can be a source of comfort I have found. We talk about hair loss, bloating and so much more. It's a community of solidarity. Both in terms of having a shared experience, and reminding each other not to listen to ridiculous ideas that we are 'wrong' for not having a flat stomach and the rest.
So if you find yourself feeling bad, or (as I did) that you are the only one with dental or other issues, then I would suggest finding support from others. It really can build your confidence up and help you feel less alone. And nobody should feel alone with health issues.
What is medical gaslighting? And do women experience it more often?
What is pill shaming? (and the impact ob those with chronic illness)
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Anne Sweet says
Yes to all of these. I have issues but I'm old and it doesn't seem to matter so much, my teenage daughter is a different story and I worry so much about her. We've already had to delay college for a year because she couldn't get her conditions under control. If only people were more understanding and willing to talk about taboo subjects that really shouldn't be taboo...I mean...who doesn't go to the toilet? Some people just need to go more than others and that should be normalised.
So agree, but you are as important as your daughter (although I know what you mean) :). It's so strange that certain bodily functions are the subject of stigma, while others are not. As you say, we all use the bathroom after all!