Skin deep: Living with Lyme disease and putting a price on life

If you’re one of the millions of people worldwide living with a chronic health condition, whether it’s itchy eczema or psoriasis; a hidden illness like fatigue, depression or PTSD; or a physical disability; you’ll know it’s not just skin deep. These conditions impact the lives of women every single day – physically, mentally and emotionally. Our latest series ‘Skin Deep’ dives into some of the most common and rare health conditions and shares the stories of the people who have them

Avril McDonnell was bitten by a tick in her late teens. The infection that followed burrowed its way into her body and subsequently developed into Lyme disease; a crippling bacterial infection passed to humans through a tick bite. Also known as Borreliosis, the disease causes flu-like symptoms like headaches, fever and joint pains. If undiagnosed or untreated, Lyme can cause severe debilitating symptoms including chronic fatigue syndrome, fibromyalgia, arthritis and multiple sclerosis.

The disease is currently the world’s fastest growing vector-borne infection according to ticktalkireland.org; a foundation set up to raise awareness and help those affected by it. More than 80 countries are affected by infected ticks but despite this, most of the population are unaware of the dangers associated with them. And it’s frightening to think that a tiny tick can pack such a nasty, life-long punch.

Avril, 33, who was a scientist in her past-life before being infected with Lyme, is one of 50-100 people annually diagnosed with the chronic condition. Here, she shares her journey with us; giving a tiny insight into the fight she – and every other Lyme sufferers – have to endure every single day.

What is the name of your condition and how does it affect you?

I have been battling a chronic illness called Lyme disease for the past number of years. I was bitten by a tick when I was in my late teens which caused an infection to start and spread through me. As the years progressed, the infection spread to every nook and cranny in my body but I was still undiagnosed. Finally, in September 2014, my body could not take any more and completely crashed and I was eventually diagnosed with Lyme disease. For the last four years I have undergone every treatment available to me in Ireland but, unfortunately, nothing has worked. Symptom wise, I am mostly affected by crushing fatigue, extreme nerve and joint pain, sleep problems, headaches and skin issues. This disease has also kick-started autoimmune conditions such as psoriasis and psoriatic arthritis.

Avril McDonnell. Source: @apalershadeofbeauty

Has it restricted you in any way?

I’ve had to leave my job as a scientist and now spend most of my days in bed and housebound. It is incredibly frustrating, especially when you have such a desire to live your life to the fullest. I cannot achieve the little things I once took for granted like being able to walk my dog, go out for dinner with my husband or even manage to put on makeup. I feel like a prisoner who has been locked away; my freedom, identity and independence has been completely taken away from me.

How have you overcome your condition?

Unfortunately, no matter how hard I fight I have been unable to beat this complex disease. What has kept me going mentally is my little blog, A Paler Shade Of Beauty. It’s my own little slice of the internet where I have the freedom to be me. I have met some wonderful people that have given me so much hope and strength. My body may be struggling to fight this disease but I am trying to stay strong mentally.

Avril McDonnell’s logo that she proudly displays across her social media and blog

What do you do to feel good about yourself?

A big part of being physically ill is the psychological implications it causes. My self-esteem is cripplingly low and I have difficulty accepting how my body looks. What keeps me relatively sane is my blog and my passion for giving other people going through illness a voice. Once a week my husband and I will go for a drive in the car. We will pick up a pizza on the way or have a little picnic in the car and watch the planes land at Dublin airport. I also try to practice mindfulness daily and receive acupuncture once a week, which really helps me relax.

What’s your stance on the beauty industry when it comes to skin conditions?

The more time I spend blogging about beauty products, the more I’m becoming aware of the increasing use of photoshopping; not only by the big beauty brands but also fellow bloggers and influencers on Instagram. There is such an emphasis on perfection these days that the true meaning of beauty has become distorted. It’s virtually unheard of to see hairy legs, cellulite and acne let alone more serious skin conditions such as scarring, pigmentation issues and psoriasis being used in advertising campaigns. There is still a stigma surrounding skin conditions and I find it alarming in this day and age. Personally, I like to use my own platform to represent ‘real people’. I have been very active in discussing my disease and sharing pictures of how psoriasis has affected my life.

What has been the lowest point on your skin journey?

The lowest point for me was when I developed severe psoriasis that spread rapidly. Not only was it incredibly painful, but leaving a trail of skin behind you every place you went is very upsetting. I couldn’t get any relief from any topical solutions and even my family were shocked by how aggressive it looked. I also developed adult acne as a result of the high levels of inflammation within my body. You think that in your 30’s acne would be a thing of the past, but unfortunately, it can affect anyone at any age. I felt I was limited with regards to the clothing I could wear and did not feel confident to expose my skin and it’s really affected my self-esteem.

I hope to undergo stem cell therapy a form of immunotherapy in Germany towards the end of the year. Unfortunately, it comes with one hefty price tag (€30,000) that I honestly cannot afford. I have had to make the difficult decision of setting up a go fund me page to ask others for help.

What have you learned about yourself by dealing with a chronic condition like this?

Being ill has taught me so much. My whole perspective on life has changed. I can now identify the important things in life. I have acknowledged the true strength and resilience I possess inside and have learnt to let go of negativity in my life. My desire to live is now more prominent than ever. I have also developed an immense passion to help give other people going through physical and mental illness a voice. I know how loud I had to shout to be heard, so I want to give people the confidence to use their own voices to get the treatment they deserve. I also believe that there are so many elements to beauty and have developed a mantra that I firmly believe in ‘even through illness, beauty remains’.

Who inspires you?

To be honest, there are a lot of everyday individuals who inspire me. My Aunty Doris is the strongest person I know and someone I always look up to. She is the true definition of resilience and strength. She has been through so much in her life and is still standing strong in her 80’s. I love Winnie Harlow and Ashley Graham. They inspire me and really encourage a more positive movement towards body image. Closer to home, Emma Mhic Mhathúna really inspires me as she is using her voice to save other women’s lives. Even though she is battling a terminal illness she still manages to selflessly think of others. That, in my eyes, is a true inspiration.

What’s next?

I hope to undergo stem cell therapy a form of immunotherapy in Germany towards the end of the year. This treatment promises to be extremely beneficial to Lyme disease patients and I personally know three women who underwent this treatment and are back living their lives again. Unfortunately, it comes with one hefty price tag (€30,000) that I honestly cannot afford. I have had to make the difficult decision of setting up a Go Fund Me page to ask others for help. It is an incredible amount of money but I desperately need this treatment. I have so much living left to do and I want to use my voice to help others when I finally get better. I may be just one person but if I can use my voice to help others than all of this will have been worth it. I am also undergoing broadband UVB therapy in the hospital which is really starting to help minimise the size and thickness of the psoriasis plaques on my body. Seeing an improvement even if even slightly has really helped my self-esteem and now I feel somewhat more comfortable wearing short sleeve tops.

If you would like to help Avril achieve her €30,000 milestone, you can donate to her GoFundMe page by clicking here.