1. Do you have a primary diagnosis, if so, what is it?
2. How long did it take you to get diagnosed?
A: 2 years
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: It had felt like really long time of struggling through, not sure what was going on with one trial after the other and it was actually my masseuse at the time who suggested it to me – as she could hardly touch me anymore. So as I was the one who suggested it to my doctor, it wasn’t a huge surprise. While it was comforting to have some sort of an answer, and to know I wasn’t just imagining it all, obviously it is very disheartening. Partly because I had been searching for 2 years to try and ‘fix’ whatever was wrong with me, and having this diagnosis at the time meant a realization that it wasn’t something I could fix, but something I just had to manage. The benefit to this though, is that only once you know what your dealing with, can you learn to deal with it better… You can’t find a solution when you don’t know what the problem is. So that is definitely something to focus on.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Never give up and never stop searching for answers. Often you will find you have to suggest things to your doctor, always go prepared, do your homework, know what you want to talk about, and always bring suggestions – so they don’t just tell you there’s nothing they can do, because in fact they just don’t know what to do. Also, don’t be disheartened when one trial or one treatment doesn’t work, because you will find that each thing you do or try will bring you one step closer to finding answers and to finding something that works for you.
5. Has your chronic illness changed your perspective, and if so, how?
A: Definitely – in many ways! It kind of distorts your reality. I have worked really hard on learning to not compare my life to others or to the past, as well as learning to accept my condition and my current situation. For most of the population, not being able to work, having to live at home, not being able to go out and do what you want all the time, and if you do, struggling through it and suffering for it afterwards – is not a normal situation.
For me however, I have actually become okay with it. I know others have it a lot worse, and I actually find myself comparing my life to those who have it so much worse on the health front. Therefore just remaining grateful for the fact it could be worse, instead of comparing myself to a healthier population and thinking it could be better! You get used to a new norm that includes pain, fatigue and struggling through each day and you build a strength and resilience against that.
6. What moment are you most proud of in your chronic illness journey thus far?
A: I don’t think there has been any specific moment per say, more just how I have handled it. I realized the other day that while people may have said it to me, I have never once said ‘why me’, ‘why is this happening to me’, ‘I’m so hard done by’ sort of thing. Of course I’ve had my down days, but never once have I felt sorry for myself, and I guess a lot of that comes from that distorted reality, remaining grateful for what I can do and remembering that it could be worse. I always remained positive and determined, and to a great degree I still live my life. I still force myself to travel, or to go out for dinner or drinks now and again. My outlook is that while we may struggle and it’s not easy, it is our attitudes that define the life we lead, not our conditions. My attitude is that it is all about balance, give a little, take a little. Push yourself to do things you want to when you can, knowing it may have a price attached to it, but that it’s worth it to be able to still live some sort of a life, then you rest, recoup and repeat.
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: Hmm, that’s a hard one! I think it would have to be right back when it started (the first major trigger for my fibro). I was still at uni and had had (another) chest infection, but this time after the virus had gone, the chest pain was still there and gradually getting worse. So I went to the late night doctor to get checked out, he threw out some big words, gave me some painkillers and told me to go to the doctors in the morning. Overnight the pain increased to the point I was crying down the phone to my mum, scared, hardly able to move or take a deep breath and not able to sleep. I went to the doctor in the morning and she told me it could be a collapsed lung, blood clot, or something along those lines! She also said she could visually see my back was spasming – so you can imagine the kind of pain I was in.
She sent me off to hospital to have emergency x rays and blood tests done and had scared me so much I balled my eyes out the entire way to the hospital and the entire time I was in the waiting room, with everyone staring at me… Turns out, not the hospital nor the doctors could work out what was wrong with me, they prescribed me mega strong painkillers and told me to go home and rest - in the middle of my final year at uni…!
So mum drove all the way to pick me up and take me home, I spent two weeks in bed passed out from the painkillers, hardly able to move from the pain. I visited my doctor while I was home and she diagnosed me with Costochondritis. I then had to come off the painkillers and deal with all that anxiety while trying to build my strength back up and catch up on my university work to get the first I was trying so hard to achieve. Luckily the university was very supportive during this time, I worked hard and still got my first!
8. What or who has helped you the most during the lowest days?
A: The who has to be my boyfriend. To be honest, I think I would have been in a very different place and this would have been a much different experience without him. I haven’t had any friends to support me throughout this and so it would have been a very lonely experience without him.
The what – and probably more helpful for others to know - recently has been YouTube! Since the new year I decided I was going to flood my mind with all kinds of positive personal development and really work on myself, to learn and grow. I have days – as we do – where I feel so awful that’s all I can think about, which isn’t very helpful as all this does is make you feel even more awful! So instead, I choose to put something positive in, to change my focus. I watch talks by Tony Robbins, Oprah and any kind of positive, motivational or personal development speeches.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Never give up! Firstly, never give in to the pain. Keep pushing, keep fighting for the life you want, for the things you want to do. Just because something is hard and painful and you might pay for it after, it doesn’t mean you shouldn’t do it. It’s so important to pace yourself, to know your daily limits, but it is also important to test them every now and again – give a little, take a little, it’s all about balance!
Secondly, never stop fighting for treatments that work and pushing your doctor to test everything. Try everything, each thing you try, pay attention to what it is telling you to try next.
Finally, never underestimate the power of the mind. There are a lot of studies that are showing a link between Fibromyalgia and previous trauma or stress in life. This is the route I am currently going down. I am working with a therapist to work through all my ‘issues’ and to influence my mind and my pain receptors.
10. What would you like the world to know about life as a chronic illness patient?
A: The thing I worry about most is judgement. Not judgement for the fact I am ill – it doesn’t bother me that people see I have an illness. What bothers me is judgement from people who just don’t understand. People who might see me dressed up, in makeup, out for dinner or travelling and think ‘there’s nothing wrong with her’. Or just not get what I’m about and what my message is. This bothers me because I want people to know that there is a reason these illnesses are called ‘invisible illnesses’ and what they see on the outside is such a distortion to how I feel on the inside.
I want the world to know that just because I fight through and I force myself to do things – because I refuse to give up and I try to help motivate and encourage others to do the same - this does not mean that I do not suffer and struggle through every day. The world needs to understand the impact chronic illnesses have on people, and learn not to judge them by how they look on the outside, but rather with an understanding of what their illness is and how it affects them individually.
By Chloe | @fibro_chlo