September is ‘Pain Awareness’ month and highlights the importance of spreading awareness of chronic pain and reducing the stigma that people with chronic pain face both in our healthcare system and society. It is also ‘Invisible Illness’ week and I would like to emphasise that there are hundreds of millions of people in the world with invisible illnesses that feel misunderstood by everyone. Unfortunately, living with Ehlers-Danlos Syndrome means living with chronic pain – which is one of many common symptoms. This invisible disease comes hand-in-hand with invisible chronic conditions that will follow us forever. All we need is for people to understand and accept us.
As far back as I can remember, my whole body has always been in pain. I vividly remember asking my Mum when I was 10 years-old, “Mummy, does your whole body and joints always feel achy and sore?” My mum would take me to the doctors and they would always say that it was ‘growing pains’.
The funny thing is, I completely believed this and thought it was completely ‘normal’.
But, it was not ‘normal’. There is no such thing as ‘growing pains’.
As a child, I was experiencing the effects of all my joints in my body wanting to fall apart, but all my muscles instead were actively trying their hardest, over-working trying to keep everything together.
I did not know that I was living with a rare genetic disease.
I did not know that I was living with chronic pain.
I sometimes think, what if I was diagnosed at an earlier age?
Maybe my body wouldn’t have deteriorated so quickly…
Maybe I wouldn’t have needed the lifesaving neuorosurgeries…
Maybe my life would have been different.
To be honest, I don’t think I know what living without pain feels like…
The thing with chronic pain is that it never goes away. It is always there. It is always unpredictable. The struggle is real. Everyone’s experience of pain is individual and we deal with it in many different ways (e.g. pain management, acupuncture, meditation/mindfulness). But the one thing that I believe everyone living with chronic pain can agree on is that we are trapped in a body that thinks this pain is ‘normal’. We don’t know any different or what it is like living with the freedom of no pain, which many people take for granted.
Chronic pain does not mean that I have a low tolerance to pain. In fact, it is the complete opposite! I deal with debilitating pain every single day. Some days are better than others. One day walking up a flight of stairs is no problem, but the next day one step feels impossible as my joints feel like they are on fire.
Navigating in a world with an invisible disease can be extremely lonely. Sometimes it is easier to not make plans than to cancel them. Please don’t be quick to judge or give up on a person as they are busy with doctors and treatments. Some people did not believe me when I said I have a genetic disease and suffer with chronic pain because I ‘looked’ fine. Suddenly, this became very ‘visible’ when I needed to wear a neck brace, back brace, use a medical walker and wheelchair. I became one of the many people around the world who fight every day just to survive – but that is what I had already been doing throughout my life without all of this ‘armour’.
As a patient living with chronic pain all my life, I can say that I have become pretty good at disguising it. On the outside I may be smiling, but on the inside I am being tortured and holding back the tears as best as I can. I am not complaining. I am just trying to live. Being true yourself, removing your positive smiley ‘mask’ and having a good cry sometimes is a good thing so people can really see how you are feeling, be sensitive and react appropriately. Finding a good balance between the two and having patience is important because family and friends at times will struggle with how difficult our world can be, and even they feel like they are in despair because they can’t take the pain away.
The quote of “no pain, no gain”, I first thought was not true to anyone living with chronic pain. The reality is after having all of my lifesaving surgeries, yes they has stabilised my spine, but it hasn’t taken my pain away or made me “all better” or “back to normal”. I still have the daily struggles I had to deal with before. Even though the majority of my symptoms have lessened, they are still there. I still have to be monitored for the rest of my life and most likely need more neurosurgeries. I still have to live with my full body chronic pain and no amount of pain killers, pain management, acupuncture etc. will ever take pain away completely. But at least I am doing something instead of nothing about it. At least I am trying my best to help manage the pain so I can try and live a better quality of life.
Although now I believe that this “no pain, no gain” quote is somewhat true because now I understand how much I have gained over the past 23 years of my life, in spite of my pain.
I have gained and grown so much more than I ever thought possible. I somehow found the strength to survive my eight month life-threatening ordeal in the U.S.A. and believe that is down to the resilience and perseverance I have learnt living with chronic pain and EDS.
Although I occasionally think of what my life would have been like if I didn’t have all these medical problems, I know it would be nothing compared to what I am doing now or who I have become because of it. Through all of these struggles, I have been given the opportunity to truly understand the meaning of life, to enjoy and be present in every moment of it. Having to fight for my life has given me the maturity of a different perspective and appreciation for it that most people my age may never begin to understand.
The loyalty and respect I have gained from my family, friends, friends of friends, and strangers is phenomenal. Seeing people wear the #CareForLaura wristbands, receiving “thinking of you” cards and emails, donations, volunteers to help fund raise – you are all supporting me, you have been a part of my journey and have been beside me every step of the way. You never doubt my ability or strength to pull through. This is what makes up for all the struggles I face each day. Being grateful for all of this is an understatement.
Have I experienced some of the worst pain known to man? Sadly yes, but having a pity party will not make my Ehlers-Danlos Syndrome or chronic pain go away.
Learning to accept and understand the fact that some things in life are beyond our control and adapting to change is good, is one of the most important things to live by in life. Why? Because it is what it is. We cannot change the cards we are dealt, just how we play the ‘game of life’.
I can say that my “no pain, no gain” experiences of living with an invisible disease and chronic condition has made me grateful and proud of the person I have become today. Why? Because I would be a completely different ‘Laura’ without it.
Remember that not every person’s illness, disease or pain is visible. It may be difficult for you to recognise and understand the challenges a person may face with an invisible condition because they may “look normal” or “don’t look sick”. But nothing could be further from the truth.