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Cécilia Rousseau was diagnosed with Multiple Sclerosis (MS) over 20 years ago. Read about how she learned to accept her condition, and how intermittent self-catheterisation gave her confidence and freedom.
54-year-old Cécilia Rousseau lives in France, is divorced, and has a son in his twenties. She was diagnosed with Multiple Sclerosis (MS) over 20 years ago, and has lived through several years of relapses and subsequent periods of recovery. Cécilia has worked the majority of her career as a hospital representative for the pharmaceutical industry and has specialised in the MS field. She spoke with Hollister to share her experience with MS, how she became an “expert patient,” and how she encourages others diagnosed with the condition to live with acceptance and wellbeing.
In 2005, I had a major MS flare-up
I ended up in a wheelchair, unable to walk and completely paralysed from the navel down. In hospital, I had a permanent (i.e., indwelling) catheter, and when I was discharged I was told that I’d need to learn intermittent self-catheterisation (ISC). It was the first time in my life that I’d heard of ISC. I was just given a catheter without any real explanation and left in my room to “give it a try”.
This was many years ago and it wouldn’t happen like that now. Eventually I figured it out how to do it and I was discharged with a supply of intermittent catheters. I recovered slowly from this episode and eventually was able to urinate normally again – so I stopped doing ISC.
Bladder problems started taking over my life
Time went on, but things weren’t quite right. My bladder was weak. Wherever I went, I would locate the toilet straightaway. At the cinema, I’d always sit near the back so I could go to the toilet easily during the film, and when I went to work I always took a change of clothes in case I peed myself. I was constantly worried about leaking and, as result, I started isolating myself.
Suddenly one day I had an epiphany. I realised that I’d just accepted this bad situation with my bladder, thinking it was simply part of my disease, that there was no solution, and that it was something I’d have to live with. Something had to change.
I decided to try ISC again – and it changed my life for the better
As I’d had a less than ideal experience with ISC all those years ago, I decided to go back to basics and start again. I re-learned how to do it, and this time I had great nurses who took their time and explained everything carefully.
As I learned, I kept telling myself three things about ISC: 1) It’s going to be fine, 2) It’s going to solve my day-to-day problems and improve my quality of life, and 3) I’m not ashamed to have this catheter in my house, in my life, and in my bag. If I had to take out the catheter and walk across a room with it in my hand, I was not going to have a problem with that.
Intermittent catheters have given me so much freedom. No one even knows what they are! I can just pop one in my handbag or in my pocket – it could be a tube of mascara, it could be anything – so there’s no awkwardness anymore.
With ISC I can have a social life and do what I want; everything is so much easier. For example, if I’m going to see a friend of mine I’ll self-catheterise before leaving – and knowing that I'm going to be fine for two and a half hours is a real life-changer. I don’t have to worry about wearing sanitary protection or arriving with wet trousers; I can just look forward to meeting my friend. Then, I can do ISC again every two or three hours and it’s just a part of my day.
I found an intermittent catheter that I really like
I use Infyna Chic™ intermittent catheters and I keep them in my bathroom. They look so nice that I don’t need to hide them away, and I think that’s important for a woman. If I’m out and go to the bathroom, I have a catheter in my bag or I hold it in a closed hand because it doesn’t take up much space and is very discreet. How far I have come!
Coming to terms with an MS diagnosis
When you have MS, I think you have to go through acceptance stages. At one time, I had to accept that I would need to walk with a cane. At another stage, I had to accept that I would need to use a wheelchair. Once I accepted these situations and realised the good side of them, they didn’t feel like constraints and things began to improve.
For example, on days when I couldn’t walk, I had two choices: use the wheelchair and go out with my girlfriends or stay at home. Once I realised that the wheelchair allowed me to do things, I ditched the negative feelings about it. ISC is the same. It might scare you initially, but once you realise how much it will help you in everyday life you’ll come to view it positively.
Gaining the confidence to address your urinary issues with your doctor
Bladder problems occur in at least 80% of people with MS , and they can start at any time. Some of us have urine leakage, others have urine retention issues.
Like most of the MS patients I meet, I only see the neurologist once or twice a year. Looking back, when I talked to doctors about my urinary problems, I didn’t tell them how they were affecting my quality of life. The doctor’s priority was my medication and my mobility, and bladder dysfunction came lower on the list. As a patient, it’s important to take advantage of this opportunity. The doctors don’t have much time and may talk about something else unless you bring it up.
Neurologists are educated, intelligent, and caring – but urology isn’t their specialty. If I hadn’t eventually shared my problem, the doctor simply would not have known, and wouldn’t have referred me to a rehabilitation clinic or a urologist. I wouldn’t have re-learned ISC and my quality of life would not have improved.
When performing ISC, take your time and stay calm
I do ISC every day, between six and eight times. But some days it’s easier than others. If I’m stressed or in a rush, it can be more difficult – so I have to remember to slow down and relax. If it doesn't work the first time, I’ll just take another catheter and start again. You have to find your own little techniques and the right position for you.
For example, I always do ISC while sitting on the toilet. One day I was sailing and the toilet in the sailboat was small. I wasn't comfortable sitting down so I stood up instead. I thought ISC would be difficult, but I realised that standing or semi-standing actually made it easier for me to insert the catheter.
Some days, my hands are a bit stiff or I have poor strength. But I can still hold my Infyna Chic™ catheter in one hand and lift the cap with my other hand with no difficulties. I can even just flip it open with my thumb. And when I can’t put my handbag down, I’ve even opened it with my teeth!
I might get a stopwatch and compare myself to my friends without MS!
I can perform ISC quickly now, but I think it probably takes me slightly longer to pee than my friends, as there’s a bit more to the process...disinfect the hands, open the catheter, insert it, take it out, close it, and wash hands again.
Many patients with MS can feel the urge to pee, go to the toilet, but nothing happens. So, they wait. They don’t want to go out of the bathroom because if they do, they’ll have to go back in! But that’s not a problem if you do ISC.
If I used the toilet in someone's house I used to think that it would take me longer and that people would know that I was doing ISC, which is completely absurd. Of course no one’s going to spy on you in the bathroom, and they’re not thinking about you doing ISC!
More people with MS need to know about Intermittent Self-Catheterisation
Unfortunately, many people with MS still don't know what ISC is. I see online messages about permanent leaks and about peeing oneself, asking for solutions. People are becoming more aware of ISC but there’s still room for growth. A friend of mine with MS mentioned her urinary problems, and when I asked if she’d talked to her healthcare professional about ISC she said she hadn’t even thought of it.
MS patients are connecting online
My son always says, “Mum, you’re old!” but even I can use social media. MS patient groups form their own online communities to discuss their treatments, bladder problems, practical difficulties, and personal life issues. I’m not really proactive, but if I see someone on Facebook upset about their bladder problems I do intervene. I tell them that there are solutions, suggest ISC, encourage them to talk to their doctor, tell them about support programs, and so on. I know there are lots of people who connect on Instagram too.
Generally, I'm always wary of information on the Internet. I advise people to avoid websites they don’t know and to get advice from their healthcare professionals about which sites provide the best information.
I understand how overwhelming MS can feel
I’ve worked in the pharmaceutical industry in the field of MS, so I’ve always had access to good information. And I try to look for positives, even though I’ve had very low moments.
I can truly understand when I see people diagnosed with MS who are overwhelmed. I know how much there is to take in. You know you’ll have lifelong treatment which won’t cure you, though it may prevent the disease from progressing. You may feel tired. You may not be able to do sports or activities like you used to. You may have bladder weakness and visual problems.
MS is a condition that can cause many difficulties, some of which can’t be helped – but with ISC, urinary problems shouldn’t be one of them. And there are support programs out there that offer online educational information and assistance that you can get without ever leaving home.
I believe feeling well is in the mind as much as in the body
That’s certainly been my story. When I’ve had relapses, they always came at times in my professional and private life when things were not going well. I had my cane all the time, used the wheelchair on weekends, and one day I made the difficult decision to stop working. I sought help from a psychologist to figure out what I would do next – my work was my life, so what would I do without it?
Eventually I started to do things again that I had thought were beyond me, and I realised that my stress had come from trying so hard to prove that the MS wasn’t affecting me. It sounds absurd, but that’s how it was, and as a result I was wearing myself out at work and I was deteriorating physically.
So now when I make plans, my neurologist says to me, "But Cécilia, I didn't think you’d ever do that again!” For example, I haven’t done winter sports for 15 years, but I’m going in two weeks! There are always possibilities, despite this disease.
MS patients need psychological support
Healthcare professionals are focused on the physical side of things, and may overlook the psychological support that new MS patients need. After they teach patients ISC, talking about the support available would probably only take an additional five minutes. The value would be huge and could have an extremely positive impact on the patient’s quality of life and how well they manage with ISC – it could be life-changing.
I have learned to care for myself and focus on the present
Life isn’t always easy with MS; there are ups and downs. I now arrange things so I can rest when I need to, or use my cane when I’m tired, or take time for myself, so that life stays beautiful. With this condition I have to look after myself so I can live as well as possible for a long time. I try to not look too far ahead and live mostly in the present, taking advantage of everything I can.
My overall message to people with MS
Be the expert on yourself and take charge of your own health. Only you can play this role, because only you know your own body. Have the confidence to share your problems and ask for solutions because they are out there. And get support so you don’t have to go it alone.
People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.
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