Why I try to stay positive about my invisible disability
Scott talks about his chronic illness has made him the person he is today
I think there has been a major shift in how we approach issues around disability and chronic illness in this country in the last few years. For the first time conversations around accessibility and ableism have entered the mainstream after decades of work by activists and advocates. These changes are definitely something to take pride in as we look towards the future. However, I think as a society we tend to respond most passionately to what we can see in front of us. This can often leave those of us who suffer from the less visible disabilities and illnesses stuck in the lurch.
Your mental health
It is easy to focus purely on the physical effects of an invisible disability because they are the easiest for the majority of us to understand. What is harder to grasp is the destructive power that such a medical condition can have on a person’s mental health. The constant battle with your symptoms can be exhausting, worsened by the fact that it often feels like it is one you have to go through on your own.
For me, I am constantly on guard, knowing that any progress I make could be undone by my next flare up. Everyday I try to walk the tightrope between working hard to achieve my goals and setting myself up for the inevitable burnout. I have to go about my day knowing I might never get to give 100%, to show what I are capable of. Sometimes it feels like there is a knot of frustration and anger in my stomach because of it.
It can feel like you are sailing a very small boat into a very big storm. You fight to crest one wave, but while enjoying the brief respite, you always know that there is another hurtling towards you.
Impact on your social life
More often than not it can be the social impacts of your invisible disability that can end up wreaking havoc on your life. Fatigue, pain and anxiety can all turn even the most low key social gathering into a test of my endurance. Sometimes I can come across as “dry” or antisocial, when in reality I’m trying my best to keep a lid on everything, maintaining that very Irish habit of going out of the way not to make a fuss.
I think it makes it harder to maintain your friendships or build new ones, when you can’t always give over as much time and effort to them as you want to. The decision to take the bus home rather than toughing it out in a nightclub (remember those) is normally the right one, but can also be the one you agonise over the most.
The positives of an invisible disability
For all of the difficulties associated with a chronic medical condition, there are real positives to focus on. Coping with my condition has made me a more empathetic person. I am better able to understand the needs of other people because I can relate my own experiences to the difficulties they are facing in the present. My condition has also taught me that I need to appreciate the positive things that I have in my life, rather than focusing on the things I miss out on.
Another upside of the experience of dealing with a chronic illness is that it can really helps you to prioritise what you care about most in your life. When you spend a significant portion of your time managing your condition, you tend to value the free time that you have more and you want to spend it doing the things that make you happy. know how precious the time I have is, so I don’t want to waste it, because I can’t predict what the future will hold.
Having a positive attitude
From the outside these can all seem like fairly basic things, but they take time and effort to develop. I think most people affected by an invisible disability will tell you that it is very easy to get trapped in a vicious cycle of negative thoughts and behaviours when you’re struggling. Having a more positive outlook on life isn’t the perfect solution to living with an invisible disability, but it is one that has helped me out a lot.
My condition is a part of my identity and sometimes that does mean having to go through difficult times. Yet given the choice, I wouldn’t change my circumstances, because I’ve gained a whole range of experiences that have helped shape me into the person I am today and ultimately I am a better person for it.