Parade.com caught up with Elliott who walked us through her psoriatic arthritis journey.
Psoriatic arthritis symptoms
I first noticed something was wrong with my body in about October 2013. It all started with a sore elbow, which then expanded into a sore knee, shoulder, hip, ankle, etc. I had no idea what was wrong with me but had just had a very bad double ear infection so thought I’d maybe picked up some kind of virus. I initially went to a doctor and was palmed off and told to “imagine the pain isn’t there.” When I was finally taken seriously, a general practitioner took blood from me and after seeing my results called me in for a face-to-face consultation and further referred me to a rheumatologist. We initially thought it was fibromyalgia, but I was almost instantly diagnosed with Psoriatic Arthritis by the rheumatology specialist in December 2013. He knew pretty much instantaneously after I described my symptoms and how much I’d been struggling. After that I was instantly started on an injectable medication to try to stop my body from fighting itself.
Her first signs of psoriatic arthritis
For me, psoriasis came first. Of course when it did, I had no idea that psoriasis was remotely connected with arthritis. My psoriasis was initially misdiagnosed as dermatitis so for a while it was extremely bad, especially on my scalp. In terms of arthritis symptoms, I had extreme fatigue, intense and relentless joint pain, struggled to even walk with a crutch. Initially the pain was so bad that I couldn’t look after myself. I couldn’t lift my head off my pillow. The rheumatologist believed that the double ear infection I’d had had triggered the arthritis which had been dormant in my body until that trauma. I’d also been extremely stressed at work which hadn’t helped.
Finding a psoriatic arthritis treatment
Every single day is different. Some days it isn’t even manageable. Some days I have to spend in bed because the fatigue or body pain is so bad that I can’t function. I work from home so luckily I can work my days around my condition and take breaks whenever I need to. Fitness is a tough one I’d say for most people with this condition. Exercise can make you feel good - fill you with endorphins – but it can also mean you’re unable to walk for a week as it brings on a flare. I have to be relatively careful with whatever exercise I choose to do. I like doing some at home yoga and ballet when I’m able to. My mental health can be very up and down. With a condition like this usually comes mental health troubles, as you have to completely adapt to a new and more restrictive life.
Working through a flare-up
Flare-ups are tough at the moment, as I’m at the end of the life span of my main medication, so it’s starting to not be as effective for me and they’re becoming more frequent. If my partner is off work, I’m able to sleep which I find it the best way to ease a flare-up - as much rest as possible. Baths also really help, but when my body is flaring, I struggle getting in and out so it’s best not to risk it. It really depends on where the flare-up is happening to if I’m able to work or function that day. It’s particularly difficult if it’s my legs or feet because your mobility is then instantly affected.
The mission to speak candidly about her condition
To be really honest, I would never want to portray a “picture perfect life” because that just isn’t real. I’m a human being with emotions and problems just like anyone else. I’m honest with my audience when I’m having a hard day or week, and I think they appreciate that. Sometimes I don’t want to talk about it because I feel like I’m moaning, but I remind myself that even if it helps one person know that they aren’t alone in having a condition like this, then that’s worth it. When I was first diagnosed - and really for the first year or so - I was depressed. I was really struggling and felt like I would never have a life again. I had to move back to live with my parents because I couldn’t look after myself, and at 23-years-old, that was very difficult. I had absolutely no self-confidence. It’s taken me a long time to get it back. I’m extremely lucky to have the most supportive fiancé who has helped me build myself back up. I also have Instagram and my audience to thank for boosting my self-esteem. I of course have days where it dips, and on those days I remind myself that my feelings in that moment are temporary.
The hardest part of living with psoriatic arthritis
This is a really tough question to answer because all of it is tough. I’m going to say the missing out on things. I have had to miss so many events, days with friends, nights out, concerts, trips, all because of this condition. It’s hard to explain to someone why you’re having to cancel when they don’t fully understand your condition. My condition alters everything I do essentially. I have to sleep longer than I used to. I have to usually try to fit naps in throughout the day. I’m unable to work in an office now like I did before I was diagnosed. I have to plan out events too for example make sure there will be seating. I have to cancel a lot of things because of last minute flare-ups which then had a knock on effect to the friendships I have as people stop inviting me to things. It’s very difficult to balance. I’d like others to know that it’s important you have patience with people like me who have this condition. It can be all consuming for us, completely debilitating and relentless. Sometimes we just need you to understand us more.
Lessons learned
Before I was diagnosed I assumed that arthritis was reserved for the elderly - it isn’t! I’ve learned that sometimes things don’t happen exactly as you plan them and that’s ok. I’ve learned to be more open-minded. I’ve learned people can be very small-minded when it comes to disabled people and I’ve learned the meaning of ableism. Next, Stacy London Shares Her 6 Best Tips for Living With Psoriatic Arthritis
