I have been thinking a lot lately about support networks, at home, work and socially, and I really believe that you can come to terms with your surgery if you don’t bottle it up and don’t avoid people. I know I have mentioned this subject before but think it is such an important part of recovery that it needs more discussion. How do you feel your network helps you ? do you have a network of friends or forums? Would you like to feel more empowered? What holds you back?
Yes, you get those days when things go wrong, and that can be outside of your home too, bag leaks, sad days, fatigue, and other things that chronic illness and stomas do to your body. But if you have friends, family or others online then you don’t feel so alone. You can easily slip into a “ Why me?” mentality and feel you are the only one with your issues, but I can assure you, there are many others who belong to that “ club”.
I actually feel empowered by my surgery, and I know that we can often think that people feel sorry for us and can’t imagine living with a stoma, but what they are really saying is that they feel you are so strong for overcoming such a huge life changer and they could probably feel that they wouldn’t cope as well. The thought of living with a stoma is so much worse than reality. I have talked to people who say they would hate the surgery and the thought of a stoma, and it would ruin their life, and that is ok as I am sure we felt the same, but on the other hand, that means I am a stronger person than them. I had the surgery and survived, and came to terms with my body now. Think differently, turn it into a positive and you can feel empowered.
If you think someone is being cruel or they don’t understand, then see it differently, turn it around. It isn’t whether you are good enough for them it is whether they are good enough for you, you are seeing if that person shows they are good enough to be in your life, not the other way around.
I am happy that I managed to get out there and help others. I am glad that I joined the Ileostomy association, I am glad I joined lots of forums, I am glad I write my blog letting the world know about life with a stoma. I have met some amazing people because of my stoma and my life has changed so much because of those people.
Don’t shut yourself in, even if you have an accident it doesn’t mean you will always have one. Plan your day or evening out so that you can cover those mishaps, but don’t dwell on them. I have had the odd accident at work and can honestly say that it wasn’t a big issue because they know about my issues, and I could just go and sort myself out. If I can add that it isn’t just people with stomas that have times when things go wrong, people get sick when they are out, they may have other things that cause them to feel embarrassed. I have more problems with my perineal sinus leaking than I do with my stoma, and let me tell you, it can be really difficult. It doesn’t stop me going out though, I have leaked through clothes many a time and my fabulous friends take me off to the toilet, and whilst I am in a cubicle they are rinsing and drying my clothes under the hand dryer. No on else around seems to know anything has happened and I just carry on.
I go away with them every year because I feel safe and know they have my back, they know exactly what I live with and sort me out when needed. They even offered to all wear stoma bags on the beach on my first holiday with a stoma, which was lovely but I declined and just walked out there, head held high.
If your friends can’t support you then are they really friends?