I was diagnosed with juvenile idiopathic arthritis (JIA) at 9 years old, but my symptoms appeared around 8 years old. I only had it in hands at feet at first but by 11 all joints apart. From jaw and spine was inflicted. By 12 both my hips had crumbled away. Which my specialists hadn’t realized so the damage was done and was told before my 15th birthday I would need them both replaced. I was in a wheelchair full time until I was given the operation in March 2004. I was 14 at the time.
My spine was affected a few years after this my left ankle was now fused. In a ballet position, and my left knee was replaced at 23. Because my JIA didn’t go into remission I was diagnosed with chronic rheumatoid arthritis into adult hood. I have tried many medications. Strong painkillers, steroids, anti-inflammatories, injections. But up until I was 26 nothing worked for me or my body rejected them.
I was on steroids as a child which caused weight gain and bullying. I was on methotrexate for over 14 years which affected my liver and made me miserable, sick all the time- after all it’s a form of chemotherapy. At 26 I tried on my first biologic injection it worked only briefly, so tried on another and developed hives, blisters. Then I tried a new medication called, baricitinib. I was so happy it wasn’t an injection! It’s a daily tablet and for the first time since being diagnosed I see a bright future. Although I’m waiting on my hips to be redone, I’m currently going through a bad patch. This new tablet has been my savior.
Bio (Who are you? What do you do? Tell me about yourself):
I’m currently studying Psychology at the moment, I love it!
I enjoy all things creative, baking, cooking, drawing, painting and arts & crafts. I love challenging myself. I also love to use my hands and I think if you have RA, especially in your hands if you don’t use them, you lose them. I also love learning new skills or just learning in general, especially history and the way the mind and body works.
Also, I love to travel, whether it being in amazing Scotland or elsewhere. We have magnificent places you must see. Further afield I’ve been to Amsterdam, England, Milan and Salou but have lots of plans to see other places.
Is there anything that helps you rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
I don’t think controlling RA symptoms is all about medication. I believe having a steady weight and keeping healthy is key. My weight ballooned to over 98kg (217 lbs) I felt miserable. I did something about it and after four years I am maintaining at 58kg (128 lbs). I learned about nutrition, exercise and what made me flare. RA is an unpredictable disease and if you can help make it a little easier, why not?
I have a wonderful support system. My family & friends are amazing, I’m so lucky I know this isn’t the case for all. I love every one of them and am grateful for everything they do for me. I think that’s why if I can help someone I will. I think RA has given me more empathy and sympathy for people and their pain.
Having this sort of illness makes you look at the world differently. When I have lots of bad days then I have a great day, I smile so much that I look like a child on Christmas morning ha-ha! I had a man a few months ago ask me, “Wow you look so happy did you win something?” but no it’s because I could walk that day. I just laughed and said “Yeah sort of.” I felt like I had won something- won a day with less pain.
I look at all situations with this child like wonder of doing things for the first time. I throw myself into things and give it my all.
Lastly, one of my pet peeves is when healthy people say they don’t have time for exercise or can’t exercise to stay healthy but I did it and I had days where I couldn’t move. Losing weight is 80% nutrition 20% exercise, we have to look after our bodies the best we can. I love to swim and go for walks, exercising makes me happy.
What does life look like at its best with your condition? (Describe a what a good day looks like)
A good day for me includes getting to do what I actually planned, going out with my family & friends not having to think about my RA, just fitting in doing what everyone else does. But if I wake up in the morning and can get up and move about freely I am happy.
What challenges have you faced with your condition?
I went through depression as many people with chronic illnesses do. I tried medications but it didn’t help me. Exercise was my anti-depressant.
Having an “invisible” illness is difficult because others judge you. My favorites are “you don’t look sick,” “but you could do it yesterday,” “your too young for arthritis,” “you shouldn’t be using that parking space you’re not disabled.”
They say our life experiences shape who we are. How has your condition molded you to the person you are today? How has it inspired you and what strengths have you gained from your health journey?
I think rheumatoid arthritis has helped shape me. I am grateful for small achievements and appreciate my life and live every moment. I take nothing for granted.
What is the one life motto or mantra that helps you to keep fighting/going on your condition and why?
My favorite quote is also my mantra.
“Choose to be optimistic, it feels better.” – Dalai Lama XIV
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