‘I vomited in a bush from pain. I was told your 20’s are the best years of your life but I was watching them go by.’: Woman with ACNES syndrome starts fashion blog. You can still be YOU’

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“For 3 years now, I’ve had a rare abdominal nerve condition called ACNES (Anterior Cutaneous Nerve Entrapment) Syndrome, which developed spontaneously and can happen to anybody. Nerves deep in my abdomen became trapped and cause constant, continuous pain every day. I’m not very mobile as a result. I spend most of my life in bed and I have to use a walking stick to walk even very short distances. Although I can’t do the things I used to do, I no longer consider being disabled a tragedy.

I just woke up one morning three years ago and from then on, I was disabled. I was 21 at the time. I woke up like a normal day but I immediately felt intense pain in my lower abdomen on my right side. My initial thought was it was just a bad tummy ache. I drove to my university and began my 15-minute walk to class. The further I walked, the more intense the pain became. Within minutes, I was sweating profusely and had vomited in a bush from the pain. I now know movement is a trigger that aggravates the affected nerves. However, at the time, I assumed it was stress due to my presentation that was scheduled for my first class. By the time I got there, I was doubled over in half with pain and consumed with nausea. Everybody told me I looked awful and should go to the doctor. I somehow muddled through my presentation, practically dripping with sweat onto the table. My tutor told me to go home and that was my last day at the university.

Courtesy of Ashley Broszek
Courtesy of Ashley Broszek

Nobody thinks they’re just going to wake up one day and their lives will be changed forever, especially young people. I thought I was too young to get sick or it was just something that happened to other people. For the next year and a half, I searched for answers to a mysterious illness that doctors just couldn’t seem to figure out. I managed to finish my degree from my bed, although I wasn’t able to graduate with my friends due to the extensions I needed.

Courtesy of Ashley Broszek

During this time, I had countless hospital stays, invasive procedures, five exploratory operations, and was told it was probably all in my head. I wasn’t taken seriously and my symptoms were often dismissed. Sadly, this is a common story for people with invisible illnesses. Luckily, I had the support of my family to push me to keep looking for answers. My mom is a paramedic who understands invisible illnesses are often misunderstood and helped me research specialist doctors.

Courtesy of Ashley Broszek
Courtesy of Ashley Broszek

The frustration of not having a diagnosis and going through so much physically took its toll on my mental health. I started to believe my life was not worth living. I’d gone from a happy, active, and ambitious person to somebody who spent all of her time in bed doing nothing. It was very difficult to adjust to this ‘new me’ compared to the ‘old me’ I loved being so much. I’d been traveling the world the summer before I became unwell. I’d taught kids in Thailand, volunteered in an elephant sanctuary, and turtle conservation in Greece. I was living life to the fullest. I had amazing friends and a partner. I was about to complete my degree in PR and had my dream job lined up for when I graduated. To wake up one day and have this all taken away from me was devastating.

Courtesy of Ashley Broszek
Courtesy of Ashley Broszek

Going through this challenging time showed me who my true friends are. The invitations had dried up and friends seemed to just disappear. My partner left me. He later told me he didn’t see his future with somebody ‘like me.’ I realize now this was all a blessing in disguise, as now I’m surrounded by good people in my life. At the time, I felt I’d lost a lot and my life was going nowhere. I’d always been told your 20’s are the best years of your life but I was just watching them go by from my bed.

Courtesy of Ashley Broszek
Courtesy of Ashley Broszek

Fast forward a year and a half into being unwell, I had a private appointment with a professor who the Internet had assured me was the expert of all things abdominal. He said he knew what was wrong with me as soon as I had walked in the door. I’d walked in with my hand pressed firmly against my stomach, supporting it how I always do. He told me this is called splinting and is a typical sign of ACNES syndrome. He conducted a Carnett’s test, which confirmed his diagnosis. We shook his hand and thanked him politely. As soon as my mom and I left the room, we burst into floods of tears. All the frustration we had felt for the past year and a half came rushing out. We cried, laughed, and hugged in the hallway. We rang everyone we knew to tell them the news as if I’d just got engaged. It was the best feeling in the world, to finally be seen and heard. Finally, somebody had given me my diagnosis.

Courtesy of Ashley Broszek

Unfortunately, ACNES Syndrome is a rare condition and not enough is known about it still. Nerves can regrow or be damaged along the whole nerve pathway. I was told to think of nerves like a tree with signals traveling from the roots, up the trunk, and into the leaves. This represents the small nerves in the abdomen, attaching to the bigger spinal nerves and sending signals up towards the brain. If you have nerve damage for a long time, the whole nerve path can be affected. So even though the affected nerves in my abdomen have now been surgically removed, the whole nerve pathway is still sending the same pain signals up to the brain. I have tried many treatments and operations which haven’t worked for me. Doctors have said ACNES is something I will always have, due to its severity and how long I’ve had the nerve pain. Although, it may be possible to ‘turn down’ the nerve signals with treatment to hopefully reduce the pain. It’s always very disheartening to put your hope into a treatment or operation, to go through so much physically, to then be disappointed again it has not worked. It can be draining but I plan to keep exploring treatment options to hopefully find something that helps. I have accepted my condition is permanent.

Courtesy of Ashley Broszek

I always say, ‘It is what it is’ in situations when there’s a problem you cannot change. You have to accept the situation, for yourself, as you alone have the ability to overcome the card you’ve been dealt in life. I decided I wanted to move forward with my life, to embrace this ‘new me.’ My pain is inevitable, but my misery is optional. The illness affects everything from your physical capabilities and your perception of yourself to what you can physically wear. Everywhere I looked, my illness was affecting my life. At first, I felt like I’d lost some of my identity when I became ill. All the ways in which I usually expressed myself had changed. I couldn’t wear the tight-fitting clothing I had worn before, due to my stomach distension. I felt self-conscious socially from the isolation of being ill and the bodily changes that come with inactivity. My hobbies and interests were mostly physical, so I felt I wasn’t enjoying my life as much as I did before. Most of all, I felt like a burden to people as I can’t do things or help people with anything that involves physical movement.

Courtesy of Ashley Broszek

I sought professional help for my mental health, to help me grieve the ‘old me’ and adjust to my new life as a disabled person. My perception started to shift. I started to set myself achievable goals and found pleasure in the smaller things of life. I felt like I had little purpose in my life, so I set out to find things I could physically do. Finding new hobbies and interests gave me structure and reignited my passion for life. I can hand-mold a pretty good mug in pottery now, which I may have never tried before!

A big way I’ve always expressed myself is through my clothes. It’s something I’ve always been passionate about, and it makes me feel good about myself when I like how I’m presenting myself. Chronic illness can affect the clothes you can physically wear. For example, I can’t wear clothing with a tight waistband and it needs to be loose-fitting as my abdomen distends when I’m in pain. It took time but I began to discover which clothes suited me and could be adapted to my illness while still feeling like ‘me.’ For a long time, I’d been living in old leggings with holes in because I wanted to hideaway. I didn’t feel I deserved to make an effort on myself. I started to feel myself again with self-care and as a result, my confidence started to come back.

Courtesy of Ashley Broszek

In order for me to start living my life to the fullest, I needed to drop the shame I felt about myself and embrace being disabled. I had barely left the house for two years due to my mobility and anxiety. Using mobility aids was the best decision I’d made. I only wish I had used them sooner. I still felt painfully insecure and would end up in tears every time I left the house using my walking stick, knowing people were staring at me. After some time, I realized the walking stick opened up so many more doors for me. The benefits outweighed any negatives that came with it. The more confident I became, the more I did. I started to be able to do the short walk into a cafe to meet friends and it helped me get around the house. However, I was still restricted as I can’t walk very far, so I got a mobility scooter which was life-changing for me. I could do things I hadn’t done in years. It was liberating and gave me the freedom I needed from my bed. I don’t even notice the stares anymore, I’m too busy enjoying life.

Courtesy of Ashley Broszek

My experience is what motivated me to start my Instagram blog to hopefully inspire other young disabled people, to show them their life is worth living to the fullest and help them regain the confidence they may have lost. I encourage self-love and self-expression, to show people you can still be YOU as a disabled person. I use the hashtag #ChronicFashion to demonstrate you can adapt your clothing to your condition, while still expressing your individuality and feel good in what you’re wearing. Fashion was such an important part of my self-love journey because it shows who you are to people and it helped me feel confident about myself again.

Courtesy of Ashley Broszek

To people reading this without health issues, disability is something that can happen to any of us at any time, so live your life to the fullest without limitations.

Courtesy of Ashley Broszek

To people reading this that have physical or mental health issues, it gets better. Your life has purpose. You will find happiness and you will be fearlessly yourself again. Do not let anything hold you back. Nobody would choose to have a disability but your life is worthy and has value. You’re still you and are entitled to a seat at the table of life. Stop struggling — use your mobility aids, take the help you need, and request adjustments so you can start living again. You can ask for help, you are not a burden.

Most of all, be proud. Please don’t hide yourself away. Be yourself exactly who and how you are.”

Courtesy of Ashley Broszek

This story was submitted to Love What Matters by Ashley Broszek from Kent, UK. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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