As you all probably know by now, Avril suffers from Lyme disease. This is a severely debilitating disease and she is currently battling hard to fight it. Just a little update, the current treatment plan has not worked effectively and she has not improved, so it is another trip back to the consultant next week to see where to go from here. On the plus side, this week has also raised some much-needed awareness regarding this horrible disease with a documentary being aired on Irish Tv called Living with Lyme. It will hopefully be up online soon/re-aired and we will share it on our social media platforms as soon as it comes available. We also watched another insightful documentary called under our skin, which if you wanted to know a bit more about the disease, the controversy over treatment and diagnosis of it (particularly in America) is a must see. It can be easily found on YouTube by searching under “under our skin”. Just a word of warning, it can be quite upsetting as it is a true insight into sufferers lives. It may also leave you feeling extremely frustrated at the politics, power and ignorance of seemingly educated professionals.
So back to the main topic at hand, as mentioned in my very first post, I suffer from a dermatological skin condition called Keloid scarring. I felt it time to briefly tell my own personal story of living life with this complex disorder. I am not asking for pity but the importance of raising awareness of this rare skin condition. The prevalence may be low but it doesn’t mean it’s not a validated and frustrating disorder. I want people experiencing this misunderstood skin condition to know they are not alone. I also felt the need to highlight the importance of standing up against body shaming. Although the media mainly focuses on the negatives surrounding female body image us men also experience such negativity.
The tender years – aged 13 to 16
Ever since puberty I have suffered with an array of skin complaints. As a young teen I took a big growth spurt which left me with significant stretch marks on my back. I clearly remember being exceptionally self-conscious about these marks whilst changing for PE in school. The marks would always garner hurtful remarks from other lads in the changing room. ”Who whipped you this time” was one that still rings home and cuts me deeply. While a lot of these remarks had no intended malice behind them, as an already shy and somewhat awkward teenager, they made me retract further back into my shell. While these marks have faded over the years they still remain a stark reminder of how body shaming exists amongst children and teenagers. These years are the formative years so to speak and any negativity experienced during this time tends to hit your confidence hard. Along with these stretch marks, the dreaded teenage years also brought about severe facial and back acne. A big double whammy! I tried every lotion and potion in a bid to get rid of them but nothing worked. As you can expect this led to serious body confidence issues.
One day cycling home from school, close to the summer holidays, I got hit by a car. I managed to pick myself up and cycle home, purely pumped full of adrenaline. Once I was in the door and told my Mam what happened she brought me straight to our local GP to get checked over. Luckily, I got away relatively unscathed apart from a fractured wrist, however whilst there, the GP also examined my acne. At that stage it covered the majority of my face, back and shoulders and I remember him commenting “let’s try and sort this out”. It was the silver lining to a terrible day. I got put on antibiotics (minocycline) which helped enormously over the summer months. On returning back to school I felt like a new man, people barely recognised me. I had a new surge of confidence, however I still felt very self-conscious. My external surface may have healed but the scars beneath still remained. If you are reading this and suffer with adult acne or your child does, I want you to know that you are not alone. My main piece of advice would be to go talk to your GP. There are fantastic treatments out there outside of the usual Clearasil face wash/salicylic acid treatments. There are a whole array of medications available to help from low-level antibiotics to stronger medications like roaccutane. While I did not use the latter during my teenage years I have used it in recent years to try help with the keloid scarring.
The college years – aged 17 to 21
While generally acne free during this time frame, a few spots always lingered, particularly on my shoulders. With regards my self-confidence, the college years were eye-opening. Girls seemed to start noticing me and I even caught the eye of the most beautiful girl I’ve ever seen, who I made my wife. When I was 18/19 a lump developed after a particularly bad spot on my left shoulder. I kept on eye on it but over the next few years but it never faded or reduced in size, instead it kept on growing. I actually have a nickname for this particular lump. Avril and I christened him “nubbin” after an episode of friends where Ross also had a lump on his back. His experience was somewhat different as his was accidentally ripped off during a back massage. Unfortunately this wasn’t the case for me. When I was 21, worried at the ever-growing lump, I took a trip to the doctor where I was told that it was nothing serious, it was just a benign keloid scar. Ok so I’ve mentioned this term “keloid” a few times now so what exactly is it. Well a keloid scar is a smooth growth which forms when scar tissue grows excessively. The reason why some people get them is not fully understood. They are more common in people of African, Asian and Latino heritage, however sometimes it can also occur in us pasty Irish folk. Having just the single “nubbin” on my shoulder, although causing a little self-consciousness never really bothered me too much. Yes it itched and yes it was a tad uncomfortable to lie on as it grew but I always told myself it was nothing to worry about and that others had it much worse.
The sensible years – aged 25 to present
It wasn’t until I was 25/26 that the condition got significantly worse, more keloids started to appear on my chest, back and shoulders. This time they were occurring at random with no previous trauma to the skin. The itch on my chest became unbearable, they were uncomfortable and I had to scratch excessively to contain the itch. I finally got referred to a dermatologist where I was told there was no real cure for this condition. There were treatments which could minimise more scars developing and contain the dreaded itch but they couldn’t fully get rid of them. The first treatment route explored was a course of steroid injections directly into the keloids themselves. This was undertaken to try to reduce their size and itch. In my case, the injections did reduce the itch for a while but the size never altered, in fact they continued to grow. These injections are also extremely painful. I am not afraid to admit that every time I got them done I curled up in the foetal position afterwards for hours feeling like my skin was on fire. Continued monthly injections are not sustainable and over time I tried multiple different treatment regimes. These treatments included daily silicone dressings to months on a heavy course of roaccutane. The roaccutane was initiated to try stem the formation of any keloids developing from underlying acne. Roaccutane has a lot of bad press for numerous reasons as it is a very strong medication. If you read my post on moisturising cream you will be able to hear more information about my experience. Needless to say it wasn’t pleasant. Unfortunately none of these treatments have worked successfully for me. Visits to the dermatologist have now been reduced to once a year. They just don’t know what to do and because it is not life threatening are just monitoring the condition. It’s sad to admit that pharmaceutical companies aren’t interested in certain dermatological conditions as there isn’t much money to be made and hence there is a serious lack of research in this area.
In one sense I feel lucky. If you look at me you would not know there is anything wrong. I guess in some way I too suffer with an invisible condition like Avril. My keloids are confined to my trunk area and are easily hidden by clothing. Underneath is a whole different story. You never forgot they are there, the constant itch a stark reminder. My skin feels extremely tight across my chest like I am about to morph into the Incredible Hulk. I debated whether or not to write this post, let alone put up pictures but I thought it a good way of you getting to know me and to hopefully help others. I am still exceptionally self-conscious about them and don’t like taking my top off in public as they have gotten worse. Although I have to admit I am very aware of them, Avril has learnt they are part of me and never makes me feel any less of a person because of them. I think in order to break the stigma surrounding negative body image amongst men and to educate people on the condition the addition of pictures is necessary.
As I stated above, I did not write this post for pity but to give those who seemingly look perfectly healthy on the outside but are hiding their illness or condition inside a voice. Unfortunately we live in an image obsessed society which is grossly inaccurate. Instead of embracing uniqueness we tend to hide it away in fear of rejection. If this personal post can teach you one thing it should be to be considerate of others as someone may seem fine on the outside but suffering either physically and/or mentally on the inside. We can be masters of deception at times especially if it’s to deflect against our own insecurities. I think it is very important to never judge a person as you don’t know what type of battle they face on a daily basis. People’s lives may come across as perfect but I am learning this perfection never exists. I also think its important to remember our mantra “Even through illness, beauty remains”. If anybody would like to contact me regarding the above etc my email is firstname.lastname@example.org