A few months back, I got a chance to go to the Annual EAU Congress and talk about one product to medical professionals there.
Yes, I’m in!
Wait, did I just agree to present a product intended for patients I know very little about?! Yes, I knew about interstitial cystitis, the possible causes, and the mechanism of bladder damage. I learned all that while studying pharmacy, no doubt about it. But there was a big piece of the puzzle missing.
I had no idea what those patients were really dealing with.
Since I love to over-prepare for everything I do, this occasion was no exception. I jumped into all of the resources I could find on this topic. I quickly dedicated myself to understanding what these patients were dealing with on daily basis. Thankfully, nowadays through social media we can learn about people’s experiences first hand – and that’s exactly what I did. Once I was done reading about scientific theories, possible causes and available treatments, I dived into the stories that brave IC patients decided to share online.
I quickly learned that the percentages I read on the pamphlets weren’t just numbers on a piece of paper – by far, majority of patients are women (9 out of 10, statistics claim). I learned that the symptoms can be so convoluted and so inconclusive that patients often wait for years to be accurately diagnosed. In the meantime, they’re often told “It’s all in your head” and “You’re exaggerating”. There’s very little understanding from people around them.
You know, when one suffers from a cold or a migraine, we know what it is. We know how they feel and we can empathise. But what happens when that person in front of us is suffering from something we’ve never even heard about? It gets a bit harder to put ourselves into their shoes.
A bit of understanding can go a long way
If you don’t have interstitial cystitis, or the so called Painful Bladder Syndrome, let’s do a quick role-play.
Try to imagine what your life would look like if you had the urge to urinate up to 60 times a day.
Imagine feeling the urge to go to the restroom right away whilst going to work, exercising or having a romantic moment with your loved one.
Imagine feeling a strong, burning pain in your pelvis every day, especially during intercourse.
When you feel like you can’t participate in everyday activities, your life suddenly becomes much smaller.
I’m sure you can now understand why interstitial patients so often suffer from depression or start isolating themselves from society. Your relationships suffer, your sex life becomes almost non-existent, and even simple tasks like travelling to work or going for a walk are now challenges that take a lot of strength, both physical and psychological.
On top of that, if you wanted to control your symptoms (and you most certainly would), you’d need to make some drastic changes in your life. Alcohol, coffee and acidic drinks would become a thing of the past, and you would need to organise your day around pee breaks. Not to mention the incredible amount of strength and composure required to ignore the fire in your pelvis and get on with the daily obligations.
Light exercise, yoga, meditation and acupuncture are all popular with IC patients since they offer some relief and a sense of taking control over one’s own life. The light at the end of the tunnel shows that living with IC can be manageable. Yes, it may take some time to get a good grasp on all the triggers that can cause a flare up. Still, with professional medical help and support from friends and family, you can enjoy life once again.
A big factor in maintaining the quality of life is independence.
Freedom to do whatever you want, whenever you feel like it. Interstitial cystitis, like many other illnesses, takes that freedom away from you, leaving you with a feeling of helplessness and loss of control. In order to keep symptoms at bay, many patients have to go to the clinic almost daily to get their therapy. Lately, there’s been a big push towards self-instill therapy systems that allow patients to take their symptoms and their therapy into their own hands. From a medical standpoint, but also from a psychological one, I believe this is a brilliant idea. Of course you wouldn’t want to go to a clinic every day. Of course you will recover more quickly in the comfort of your own home. Of course you will be more comfortable and you will feel better if you have your life under control.
Why wouldn’t you want to find a solution that allows you to live your life on your own terms?!
It is also a great solution for clinics – if patients don’t have to come in as often, it means that the medical staff has more time to help other patients. Shorter queues, less clinical hours, happier staff and comfortable, satisfied patients. Shouldn’t we aim for this with all medical conditions?!
Anyway, a small digression, sorry about that. I get carried away with topics I’m passionate about, and getting your symptoms under control, whichever they may be, is one of them. No matter if you suffer from interstitial cystitis, psoriasis or incontinence, there is a way to manage your symptoms, even if there is no cure for your condition. Don’t give up. Ask around, research, exchange experiences with other patients. You may find incredibly useful advice by simply listening.
And if you’re not suffering from IC, but your loved one, a friend or a family member is, try to put yourself into their shoes. Those are some big shoes to fill, but it may give you a new perspective and a wider understanding of what that person is dealing with, day in, day out. I know it worked for me.