Age 28. I have had SLE since I was 12 and Rheumatoid arthritis since I was 18, I am a total believer in how a positive mind is the first step in treating any symptoms and want to share how this frame of mind can help. I believe in educating people on medication or alternative treatment, as I am big on using both methods.
Quite simply, I want to help people to be in the right frame of mind to tackle whatever path they choose.
“Your disease is something you have, not who you are.” “Don’t let your disease define you.” These are common phrases those with chronic illness often hear.
When I think about it the flip side of these sayings, though, I realise that chronic illness is a major factor in defining who I am. I may drive a certain car because it is easier to get in and out of, I chose a job which suits my physical needs and I wear certain shoes because they do not have laces, which is easier for my arthritic knuckles. However these are all external influences in life.
What I want to talk about is who you are as a person – what you value and what you stand for. This is when your disease can benefit you greatly.
Growing up I was a quiet kid; I didn’t get into a lot of trouble and I just sort of cruised through life. At the age of 12 I was thrown into a world of adults – doctors, physicians, hospitals. It was then I really came out of my shell and started to decide on the type of person I wanted to be.
I learnt to speak when I was in pain; to tell the truth and be honest. I learnt to look around and take notice of others. The haematology ward at Starship Hospital is on the same level as oncology so suddenly I learnt immense empathy for others who were worse off than me. I learnt to be agile – I still had to attend school, socialise and try to live the normal life my parents strove to provide for me. Lastly I learnt how brave I am, by being at breaking point numerous times and learning to fight back.
Most importantly I learnt that this disease isn’t the end of the world.
I decided very early on that I would surround myself with people who would support me. Living with an invisible illness means you have to rely heavily on your communication skills and intuition.
I can tell pretty quickly how someone will react when I tell them I have rheumatoid arthritis and lupus.
There are the people who tell me they know someone with arthritis (usually their Nana), others who quickly inform me Omega3 is the answer to all my woes, and lastly there are the people who feel immediate pity for me.
There is nothing wrong with any of these people; what I find most significant is how they react when I take the time to explain what rheumatoid arthritis really is.
Their openness to learn, appreciation for my honesty and acknowledgment of what I’ve told them is a great gauge for me to decide if these people are worth having in my life.
As a result I have created a great safety net of people in my life who love, understand and support me. I give them the same back – not always in the same way they give to me, such as helping me move house or coping with my numerous naps. Instead, I support them by being sympathetic ear to listen to their obstacles with a sense of humour and a kind heart.
Who am I now?
I value what my chronic illness has given me. The pain, fatigue and other conditions are not symptoms I wish upon anyone. But my outlook on the world, my resilience, my gusto and my empathy are traits which I have learnt through suffering and I wouldn’t change that for anything.
I don’t feel sorry for myself; I feel grateful for what I have achieved with what I have had to deal with. As Sam Berns says, “I try not to waste time feeling bad for myself, because when I do, there’s no room for happiness”.
Next time you’re feeling sorry for yourself, watch his video and aspire to be like this young man. At 17 he has learnt life lessons the rest of us could take a lifetime to learn.
So when someone says to me, “Don’t let your illness define you”, my response now is, “It does define me, but how it defines me is my choice and I choose a positive definition.”
Sam Bern’s philosophy for a happy life: https://ed.ted.com/on/Q0fBdrVh
Is your mind full or are you being mindful? There is a big difference and since figuring out this difference, my mind and body have been so much more in sync. I wake up every morning, count 10 deep breaths then slowly assess my body from my head to my toes. I ask myself, “Is this pain a new pain? Do I feel stiff?” I feel the warmth of my sheets and listen to the chirping of the morning bird.
This is a big change from how I used to stomp out of bed every morning and begrudge my body for feeling stiff and my mind for being so foggy. This comes from having rheumatoid arthritis and SLE (systematic lupus erythematosus) since I was a teenager.
When I talk about mindfulness I don’t want you to think, “She can’t have it that bad if a few deep breaths solve the problem.” That is not the case at all; mindfulness doesn’t solve the problem but it helps support my mind.
My daily ritual used to be to wake up, stretch and instantly resent the way my body could not do what my mind was forcing it to do. Some mornings I would get up so fast without a thought and as my feet hit the carpet, my knees would buckle and my feet would explode with pain as the weight bore down on my joints. I would look down at my swollen feet and remember I needed crutches to walk and again condemn my body for its weak state. I would carry on my day always playing the ‘hero’ and never letting my body be in control of how I wanted to live my life, always keeping these thoughts and feelings of hurt inside.
What is mindfulness?
My rheumatologist once suggested I practise mindfulness in my everyday routine to overcome this feeling of resentfulness. I had heard this buzz word a lot and was curious as to what it was all about so I researched the topic.
What I found was incredibly simple. The best analogy I found had to do with washing dishes. I don’t have a dishwasher so it’s a common chore for me! I could approach the sink with a heavy heart and go about frantically washing the dirty dishes, daydreaming out the window, only half aware of the sharp cutlery lingering below my fingers, look over at my cat stretching and think, “Oh wouldn’t it be lovely to be a cat.”
Or, I could be mindful of my situation and be aware of the sensation as my hands hit the warm water and how it eases my stiff knuckles, listen to the tiny pops as the bubbles burst around my hands and realise I have no effect on anything right now except these dishes. So I don’t waste that moment to be mindful of my senses and the situation I am in here and now. Suddenly, I feel in control which is incredibly valuable when I live with an unpredictable disease.
Mindfulness and arthritis
As someone who experiences symptoms from arthritis, I know that it’s often difficult to think about anything other than the pain and how restrictive it is. However, practicing mindfulness can help bring your full attention to the present moment. When you are in pain, your body often reacts instantly without you noticing. You feel a pain, your body tightens, and then a flurry of thoughts flows through about how this pain is affecting your day or life. Mindfulness allows you to notice the distressed feelings before they take over, shift your awareness to your body and adjust in a way that can ease the pain. It is quite amazing how important self-care and self-management approaches are, as there is so much you can do on your own. The feeling of empowerment that comes from being able to do something to ease your own symptoms is a marvelous feeling.
If you want to give it a crack (lame arthritis pun!) there are some great apps you can download to help. My personal favorite is a free app called Breathe and another called Body Scan, which is an eight-minute body check-in session to bring awareness to each part of your body, noticing your experience with a sense of curiosity and openness. Even better, why not start being mindful right now? Listen to what can you hear, focus on what you can smell, relax your shoulders down, ease your jaw, gently rest your eyelids down, take a deep breath in your nose hold it for three seconds, then let it out your mouth and congratulate yourself on taking a mindful moment for yourself.
Do it for yourself because no one else can do it for you. 🙂