Incontinence. One of the uncoolest things to symptoms of illness and age. I have been busting to talk about this for a while now. Sorry to leak in all these puns, but I just can’t hold on (to them) any longer….Okay but seriously, this is a topic that is not spoken of a lot. It even seems to have managed to retain its taboo status when even periods, premature ejaculation and sexual abuse became commonly covered discussions. Perhaps it is because these other themes are seen more as ‘young adult problems’? Why not making it to the toilet in time is thought of as only a ‘whoopsie’ for infants and elderly or aging individuals, I am not sure. I can say this, it is far more common than you think.

What is incontinence?

Strictly speaking (according to what I have read on the internet), this phenomena is the leakage of the bladder or bowels. Of course, for them to leak they need to have ‘stuff’ in them, and this ‘stuff’ is, I can only assume, urine and fecal matter. We have all had that time when we ‘really need to go’, but just do not make it to the ‘loo’ in time. Everyone has been there. Don’t lie, you know you have too. Some people are fortunate or get lucky in that they only have minor leaks. While some are very unfortunate and the whole thing goes down hill, and down your legs, pretty quickly.

Why Lupus, and Lupus-Like Illnesses?

I want to emphasise this is not only a Lupus issue. Lupus as in Systemic Lupus Erythematosus, or SLE, the Lupus that everyone seems to recognise. As Lupies, we are known to experience a vagueness of thought. I do not know what causes it, but I do know it has a tendency to wipe my mind clear often and without concern for how it makes me feel. I can be purposefully walking towards one chore only to forget why I was doing it on my journey. Pains have been known to disappear mid-stride as I near the medicine box. Yes, full bladders do this too. Half an hour later as you are taking out the rubbish *BAM* I remember the need, but now only have ten seconds until I embarrass myself. We are not that able to move quickly. This is nothing new.

So We Forget Sometimes? Is That It?

No. At other times, it may only be a minor tingling for two-to-three minutes. In these times it is because you have been sitting down in a chair for a few hours or have been in a great conversation. Suddenly, the urge and tingling becomes an urgent bladder pouncing on you. Not only do you need to maneuver the whole ‘standing-up-and-easing-your-body-into-walking’. You also need to do it within a time frame. This can be okay when you are at home. Yet when you are out is often when this one strikes. Ooh and at the shopping malls, functions or school/university? Just. Great. I have had the misfortune of completely embarrassing myself twice in public with friends. One time I was grateful to be close to home, and was able to return for a quick change. The other time I was just so lucky to be near ‘the right kind of shop’.

Does Something Cause This?

I have been on one medication briefly that made my bowels ‘move most freely’. While I did not have cause for concern with that I can easily see how there could have been ‘an accident’. In fact, alternately, I am currently on another medication that gives me a ‘shy bladder’. Goodness grief and hallelujah! I say that simply because I now live with a constant cause for alarm. As well as worrying about the ‘Lupus Brain Fog’ causing me to forget my ‘needs’, and my rusty joints and stiff muscles hindering my movements, Lupus Cerebritis has a lot to answer for. With Lupus CNS, or Cerebritis, or any other brain disease, one must practice constant vigilance!! (Harry Potter style 😉 ). The brain either ignores, misinterprets or just doesn’t receive, the messages coming from the digestive system notifying it that there is a need to ‘pass waste from the body’. Leaving a full bladder or bowel to fill to the point in which it just cannot hold everything in. Or meaning it slackens the muscles holding everything in. (Gee, I would hate to think of what it would be like to mix Lupus Cerebritis and the medication that makes the bowels ‘move most freely’!)

Is There a Way to Avoid This?

Well, that depends. My tongue-in-cheek reaction is to tell you that yes you can avoid this by not getting Lupus Cerebritis, brain damage or any type of brain disease. I have such a strong hate for this ‘incontinence-business’, only because I cannot see a way to avoid it myself. I can see ways to lessen the potential for embarrassment. They are quite apparent to those who have taken the time to think about it. One option is the adult diaper, particularly if the bladder or bowel tends to empty completely and on a regular or semi-regular basis. To a lesser degree, if there is only minor leakage, it may be worth investing in some of those new ‘period panties’. They come in a range of shapes, sizes and colours. They do cost a bit more than the average undies, but that is because they do more than the average undies. I have ones from ‘Minx’ but you can find ones from other brands by simply typing ‘period panties’ into a web search. The only thing to remember with period panties, is that you need to carry around a plastic bag and a few spare pairs in case of a ‘whoopsie’. If you are a woman and your ‘leaks are a bit more epic and you do no want to change undies regularly, then maybe just using panty liners or thin period pads may do the trick? For men, I am really sorry, but I couldn’t think of anything except to suggest also looking on the period panties websites as they do usually advertise for transgender adults.


So. There we have it. We have started the conversation for incontinence. The most important part now is for you to start  to think about your Lupus and how it has affected your ability to hold your bowels and bladder. If you are concerned, you must talk to a doctor and start to develop a strategy. I know, I know, it is a bit embarrassing at first. But just so you don’t feel too embarrassed, I will share some of my personal incontinence statistics:

  • Number 1 complete accident’s: 1
  • Number 1 minor leakages: 2 per week average
  • Number 2 complete accident’s: 2
  • Number 2 minor leakages: 2 per 6 monthly

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