With some chronic illnesses there may be several times when you have to tackle some very personal issues and topics. No one teaches you how to do this and so you do it in the best way you can. But we are all different.
I came from the generation and a family where real ladies don’t fart and you never spoke about private parts to anyone but a middle aged doctor. So you can see that sometimes vanity and dignity have collided. Sometimes in the most humiliating of ways!
I would be lying if I said that I don’t still cringe at the thought of peeing myself, throwing up on myself, and my tremor acting up in public to the point where I look very perculiar indeed. People won’t make eye contact with you and are very uncomfortable to be in my presence.
It’s not very easy to reconcile. It still isn’t.
Growing up at a time where the worst thing a woman could be is overweight. That was the most awful of things to society. Seems ridiculous to me now.
Even now, people are obsessed with looks and weight; probably even more so. So where do those of us, who have misfunctioning bodies, fit in?
Weight gain is just a small part of the challenges that we can face!
Medications designed to assist in the battle with these diseases can leave you with some very difficult side effects. Very. Some cause weight gain. Some cause nausea. Some cause explosive bowel movements. Some cause emotional swings. Some cause even balance issues… the list is endless, and I swallow them down because I want help. I need relief!
As my illnesses have progressed I have encountered some situations and issues that I could never have imagined myself having to go through. Ever! Not in my worst dreams did I consider peeing myself, throwing up on myself, shaking in public, falling over in front of people, crying in public and wearing incontinence aids. Not even fellow sufferers find these easy topics to deal with unless they have to!
I recently discussed the topic of my upcoming urologist visit with a dear friend and fellow sufferer. She has been wonderful and she deals with things with an amazingly stoic attitude. Her medical background means that there is not much she hasn’t seen. I am sure this helps her as she faces her own personal challenges. But I feel like I seem to be still playing catching up, emotionally. And I am slower than I feared.
I guess I have always thought that I wouldn’t have to deal with some of these things until I was very old and people would see me as a dear old lady and therefore would be kinder in their attitudes. But when you are 30s / 40s people just stare at you when your body doesn’t work properly. Like you are hard to be around. Perhaps even drunk or impaired.
The idea that I may need catheters, or worse, terrifies me. I will be honest. I feel like I have already been put through too much. A permanent catheter is incomprehensible to me! I am not ready. I feel tearful. My friend empathizes but she also encourages me to toughen up emotionally.
I guess that is the issue. My sense of dignity and embarrassment is still a strong influencing pull, like gravity, and keeps dragging my spirits down.
I have always been a girlie girl and have loved dresses, make up, nails, lipstick and trying to look pretty. These feelings take a beating when it comes to the effects of chronic health and Autoimmune diseases.
Even doctors don’t fully appreciate the effect that it can have on your self esteem. I find this quite devastating. They seem impervious to the idea that I might struggle with embarrassment about some topics. Like the idea of wetting yourself in public isn’t an issue!
I remember the look on my doctors face when I told him (red faced) about some of the challenges I encountered during sex. It was hard for him to comprehend why it was bothering me. I felt alone, again.
I have seen a lot of posts and comments from many sufferers who take some embarrassing challenges in their stride and I am in awe. But I can’t and won’t pretend that I don’t feel deeply disappointed and upset at some things.
My husband had been amazing. I appreciate him showering me, toileting me, brushing my hair, doing my make up and general personal grooming that I would do myself. I appreciate it but I hate it. There is a huge difference.
I think people would be surprised by just how hard many sufferers must try in order to look comfortable, neatly dressed, tidy and at ease, despite having so many issues happening at the same time going on below the surface. It would be nice if people could be understanding when it came to these topics and even reassuring.
I have needed a lot more compliments and assurances from my husband now than I ever needed as a healthy woman. I wish that I was more comfortable with how my body behaves but I am not.
And sometimes I have questioned whether I ever will…