An invisible handicap

Posted by Frida Eriksen, July 12 2018

A disc prolapse is a painful and debilitating condition to sustain. It can also have knock-on effects, impairing bladder function. In this post, Frida Eriksen, 24, describes her journey, symptoms and progress and how she resolved her bladder issues. 

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At 17 I suffered a disc prolapse in the lower back. It was excruciatingly painful and caused a lot of difficulty. From my lower spine all the way down to my feet, I was in pain.

Disc prolapse

The discs between the vertebrae are filled with a liquid which acts as a shock absorber. A disc that pops out of position is called a herniated disc. If it cracks open, the liquid drains out and causes a disc prolapse.

It’s normal to confuse a prolapse with a crick in the back, when the muscles go into spasms, which also can be very painful. A crick usually improves within a few days or weeks. A prolapse may take up to a year to heal, which of course is a huge difference.

And because the two are often confused, it’s a common perception that people who are on sick leave for months due to a prolapse are lazy and people give me all sorts of “advice”. Someones dad once had a crick in the back and was back at work after three days so why couldn’t I just pull it together and be normal? 

Bladder problems

I was in shock when I first got the disc prolapse. The pain was difficult to describe and it felt like my whole leg was burning. I couldn’t walk properly or sit on a chair for longer than 30 minutes without having to lie down again. After 6 months, I also lost control of my bladder due to nerve damage  so I had to have an operation to restore control. But it didn’t improve.After the operation, I lost the ability to move my ankle properly and I couldn’t detect when my bladder was full as I didn’t feel the sensation of needing to go to the toilet. It made life tough for an ambitious 17-year-old.

My life was filled with friends, school, after-school activities and the usual teenage preoccupations of appearing cool and being popular – the usual 17 year old pursuits. But my back issues took me out of school for months. I didn’t get much sleep at night. If I was an adult I could’ve taken sick leave, but that wasn’t an option. The pain put limits on so many areas of my life I had to say no to almost everything I invited me to.

Pain is invisible

The problem with pain for conditions that aren’t immediately visible is that people tend to forget about it or don’t appreciate how exhausting it can be. It was difficult to explain to friends that even though we had made plans to go to the cinema, I might have to call and cancel on the day because the pain was debilitating. It was hard for people around me to reconcile that even if I smile I still have the same pain. I slept rarely more than 4 hours per night and was constantly tired and exhausted. My friends couldn’t grasp that after sitting on a chair for 1 hour it hurt so much that I just had to lie down. That’s not normal for the average 17-year-old, and it was difficult for them to understand how sick I really was. 

The look

Today I am 24, have been through three operations for prolapsed discs and continue to struggle with physical challenges. Those who know me well can see when I‘m having a bad day, but not others and it can frustrating. For example, when an elderly person gets on the bus, I remain in my seat because I‘m in too much pain to stand. The elder might have better health than me, but I often get “the look”. When I inform my teacher that I can’t attend the lecture because of too much pain, it’s hard to defend that day I spent walking on the beach, going to the swimming pool or just relaxing outside if the weather is nice. That’s what helps me manage the pain.

Catheterization

As I mentioned, I have trouble emptying my bladder properly. That’s why I self-catheterize. A few weeks ago, I was at the hospital for a follow-up appointment. I needed to go to the toilet before leaving the hospital. I often feel that the toilets have little space for me to use my catheter, so I use the disabled toilet so I have more space. When I was finished, a wheelchair user in the queue looked at me and was a bit angry because I had used “his toilet”. And I kind of understand his frustration so I dealt with it directly. I took out a catheter from my bag and told him that because of this I needed the space of a disabled toilet. He was a bit embarrassed and said he was sorry for being angry.

What counts as a disability?

This incident made me think of how we perceive the word handicap or disabled. It doesn’t mean that you have to sit in a wheelchair, but that’s an image that often comes to mind when people hear these words. What it really means is that your body doesn’t have optimal functioning. If you can’t empty your bladder, or struggle with pain or have a disease that doesn’t show, that’s a handicap, that’s a disability. “Don’t judge a book by its cover” is a nice saying which I try to remember as often as I can. A person who looks completely healthy and normal, like me, can be handicapped in certain situations, and a person who uses a wheelchair doesn’t necessarily have to be helped with everything.

Lack of understanding

The biggest problem with being non-visibly handicapped is that society can label you as lazy or a loser; there can be a lack of understanding. For most people to understand it, they have to have had a similar experience, but the lack of empathy I often encounter is saddening. It feels unfair that I have to defend my struggles every day, just because they don’t show. I remind myself of this when I see other people do something that might be out of step with what society expects. There’s always a reason for it, and just because someone smiles and looks healthy doesn’t mean you’re seeing the whole picture.

Thank you for reading!
Frida

Screen Shot 2018-06-21 at 11.02.35Frida's bladder symptoms are grouped under a term called LUTS – Lower Urinary Tract Symptoms. Many women will experience one of these symptoms, especially if they have a neurological condition, like Frida, or have given birth. In this eBook, we explain the terms, causes and solutions to these groups of troubling symptoms, available to download for free!

Download "Women and LUTS" eBook

Topics: Women's health, Neurogenic bladder, Lower Urinary Tract Symptoms (LUTS)