TMI (Too Much Information) I see that written everywhere over support forums. Usually there's an apology stuck in there too.
Sorry, TMI post ahead. Please remove admin if not okay.
I've done it myself on more than one occasion. But each time a small part of me thinks, I wish I could just ask the damn question without feeling like I have to apologise.
You see, every time there is a TMI post it is always followed with comments like,
OMG, me too!
I thought I was the only one.
Thank you so much for posting.
I've had the same reaction here on the blog, Whether I've posted about my bowels, or my hysterectomy, I am always flooded with thank you emails and messages. Though I wish people would post here on the blog, or over on FB, I understand their reluctance. So much of what is in truth, just a normal part of illness is wrapped up in layers of stigma.
You don't speak about those things.
Disorders like Dysautonomia come with a whole host of less savoury and often confronting symptoms. The Autonomic Nervous System runs throughout the body controlling multiple systems. And yet even most of our doctors speak only to a select number of symptoms, most commonly blood pressure and heart rate.
When was the last time your doctor asked you about your sex life? The literature is quick to point out impotence as a potential for men, but we women rarely get a mention. In truth, even for men apart from the impotence issue, little else is discussed in relation to sex. Yet whether physiologically, emotionally, or both, our sex lives can be impacted by Dysautonomia. A recent closed session from Dysautonomia International with noted neurologist and Dysautonomia specialist Dr Svetlana Blitshteyn (Sexual Health and Pregnancy in Autonomic Disorders), revealed a wide range of sexual, gynaecological and reproductive concerns. For many it was the first time these issues had been addressed let alone acknowledged. Dr Blitshteyn was able to provide answers to multiple physiological questions in these areas, clearing up myths, pointing out continuing holes in our knowledge and allaying fears for many. I have been ill for 8 years, yet this is the first time I've seen this subject addressed so directly. And the response from patients was overwhelmingly positive and grateful.
This of course doesn't include the emotional aspects of intimacy. When nausea and other symptoms get in the way of sex. Or the way we respond male or female, to body image, and the changes that can occur thanks to medication effects. For many of our doctors it would seem that as chronically ill or disabled patients we are supposedly asexual beings. Yet intimacy is an ongoing issue discussed in many forums by patients at a loss as to how to maintain it in a relationship.
Bladder and bowel issues are also highly common in the Dysautonomia community. Diarrhea, constipation, dumping syndrome, urinary frequency and urinary retention, and issues relating to continence abound. Yet again these are so rarely discussed by our doctors that patients feel there is something wrong with them when they occur. Without fail, every time I have brought up my own bowel issues here on the blog I am inundated with emails, the same for urinary issues. There are patients living with devastating continence issues who are embarrassed to discuss the issues with anyone, let alone a doctor. Yet there is help available and organisations such as The Continence Foundation of Australia who can help.
I had a little hissy fit over on FB recently about the LBL campaign from Poise, which exemplifies the problems we face.
Maybe I'm tired and grumpy today, but I get irritated with the Poise LBL ads. Are we so afraid to talk about bladders and incontinence, that we have to create an acronym to cover up what is being discussed? Women don't seek help because they are embarrassed, and yet there are organisations like Continence Foundation of Australia which can point women in the right direction to find help. There are specialised programs and specialised physiotherapists. Urinary incontinence is amazingly common, especially following childbirth, and can occur in certain patients with autonomic issues, and there are solutions, but people feel alone because it is not openly discussed. We don't need to shy away from the words 'bladder' or 'incontinence' as if there is something shameful about them. We need to be able to discuss these things, go to our doctors and find our individual solutions. Part of that is using real words and treating it as any other health issue. Take away the taboo and stigma through openness!
And given the numerous response's underneath I am not alone in a wish to destigmatise this issue.
For the most part Dysautonomia patients will be under the care of a neurologist or cardiologist. Embarrassment aside, it is not instinctive for patients to ask these specialisations about their continence or sexual issues. The emphasis is on heart rate and blood pressure, and many other symptoms simply remain undiscussed and in turn unknown. Many will need their doctor to raise the issue. Yet time and again this is not occurring. If our doctors are ignoring or uncomfortable asking about these aspects of our disorder, why would we patients feel comfortable discussing them? How do we even know to ask?
Not every patient will experience sexual or continence type symptoms as part of their presentation. But at least knowing it is a possibility opens up the door to discussions and takes away the fear and embarrassment associated with what are simply symptoms of the disorder, or potentially, another disorder. Symptoms just as normal as tachycardia or hypotension.
Being open about these issues allows doctors to treat the whole patient. It is not about expecting our cardiologist or neurologist to treat our continence issue. But to at least be able to discuss the issue and refer us to an appropriate specialist.
It is also up to us, as patients, to move beyond a TMI response to what are normal regular symptoms of Dysautonomia and other disorders. Too many suffer for our silence. Sex, periods, bladders and bowels AREN'T embarrassing unless we make them so. And openly discussing them is the only way we will change this perception.
So I say, lets remove the stigma and taboo and move forward in discussion and better all round treatment.
(I written extensively about the other taboo of mental health and chronic illness. You can find two of my main pieces here and here.)
I had to choose this Queens of the Stone Age song as my musical accompaniment. It's one of my favourites of theirs from the much under-rated Rated R album, plus the chorus kept popping in my head as I wrote.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.