1. Do you have a primary diagnosis, if so, what is it?
A: Rheumatoid Arthritis. The pain and inflammation was put down to over-training, but I refused to accept that:)
2. How long did it take you to get diagnosed?
A: I’ve always been very connected to my body and very aware of feelings and what it needs. I had been living with the pain and symptoms for about 3-4 months without taking it further, but once I was 100% sure I had RA through my own research, I went to a doc and asked him to do a test. He said it’s highly unlikely but continued anyway and 1 week later I got the phone call that something was up. I was referred to a Rheumatologist and he confirmed that I had RA a few days after the first phone call.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: It was a combination of relief, fear and devastation oh and hopelessness. I had a mini breakdown that day. It was on world arthritis day which freaked me out but I also like to find signs in things so I knew it had to mean something and there was a reason I got RA. The first thing I did was ask my parents to drive me to uni, only to skip and kind of just wander around, from telling the guy I was seeing at the time (he was an ass about it) to sitting on the beach for so long that my mom called to see where I was. As vivid as that day was, it was also such a blur of thoughtless actions but also so many thoughts.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: 100% trust your instincts, listen to your body and believe in what you feel. I also urge you to find the right Dr and get second opinions if you don’t feel at peace with what a Dr has said. It happens too often that amazing people are being misdiagnosed because they aren’t being heard. This is when physical and mental damage begins and it’s difficult to find strength after this. I’m also very big on expressing yourself, tell the people closest to you how you’re feeling, your fears or concerns sometimes we just need that extra backing to get through the darkest days.
I also know it’s not always the thing you want to hear but positivity and mindset will get you through almost anything. You are stronger than you believe and you will start to see this along your Chronic Illness journey, you begin to see things differently to “regular” people. My mind set, attitude and positive outlook is the only thing that has gotten me through the very very bottom. I believe it is make or break for us Warriors.
5. Has your chronic illness changed your perspective, and if so, how?
A: Completely, I like to compare it to starting a new life, I’ve had 2 lives; the one before and after my diagnosis. The exciting thing about a beginning is the “new”, almost a clean slate if you choose to see it that way. The fear, anxiety, despair and hopelessness – that never goes away, it becomes a part of you, but the choice to turn things around, the choice to accept this new life, to own the cards you’ve been dealt and try your best to be positive that’s when you start to live again.
6. What moment are you most proud of in your chronic illness journey thus far?
A: My proudest moment is probably the last 5 years and how I have evolved as a human and how my outlook on life has changed. It's probably the thing I am most proud of. It’s an awesome feeling when you realize life is RAD. Yes you’re in pain and you move slower than you used to and let’s not forget that your middle finger is deformed. All of these things are very real, but to be positive and make some lifestyle changes, learning to know and understand my body, following my feeling centre. Doing the things I’ve been afraid to do - finding the balance between tired and fatigue. Knowing my limits. Appreciating every single moment.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: 2016 was the absolute pits for me, I got involved in an extremely toxic and abusive relationship and although it was only 6 months, my health deteriorated rapidly from the stress and toll the toxicity took, I developed deformities in my hands; I had a surgery related to my RA; I could not walk up and down stairs; I gained weight; my hair was falling out and I was becoming an empty shell. It makes me so angry that I allowed a human to be more detrimental to me than my actual illness, but had this not happened I would not know what to avoid in the future. On this note, stress is the biggest trigger for me with my RA, emotions too. If you have someone or something in your life that may be getting you down, please get rid of whatever or whoever it is. This is your life and your health and you have every right to make that call and choose a positive and emotionally stable life (considering the instability of living with chronic illness). Be a little selfish and love yourself first.
8. What or who has helped you the most during the lowest days?
A: Support systems are everything. Family, positive people and energies have been life-saving for me. Also, self-love and acceptance; seeing myself in a light that contradicts my illness has enabled me to live a better life. Trying things I never thought I could do, too. I really try push my limits and do things I’m scared to - it helps me feel in control of my circumstances. I certainly would not be where I am without my family and my inner strength.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Everything is going to be okay. It won’t always be okay and the pain we suffer from is so real. But do not let RA win. Rising above the pain and your immune system will take you places that you never thought you could go. You are so much stronger than you know, so follow your dreams and really listen to your body. Understand your limits and compromise when needed. Surround yourself with good vibes and positive distractions.
I also feel that as people that suffer from chronic pain we lose patience with “normal” people’s complaints. This was an issue I had for a good 3 years. I could not hear your issues and about your aches and pains. But we are all human and we have RA and chronic pain because we can handle it, We’re more kick-ass than the rest. So don’t get annoyed with other people for their issues - they simply can't relate. Rather just walk away than allow different comments to affect you.
10. What would you like the world to know about life as a chronic illness patient?
A: I want the world to know that there is no quick fix for us. Everything is more difficult than others and that small achievements in the general publics’ eyes are massive milestones for those living with chronic illness. We are more sensitive and have to try a little bit harder just to get through the day.
Your pain and your tiredness is not comparable to ours, so rather don’t compare - rather educate yourself. Be more patient and understanding. We have a lot more ups and downs than the average person and we find it hard to relate to others at time. If everyone could just be more kind and understanding and also to drop the pity at the same time haha. Respect us, educate yourself and just be more understanding. I think doing these things would make the world a better place (and not just in the chronic illness community).