By Sarah Griffin
Hi, I’m Sarah, I’m 33. I have Psoriatic Arthritis, which my rheumatologist once described to me as “Rheumatoid Arthritis’ big ugly sister.” It lives up to that wonderful description.
My patient journey hasn’t been easy and has at times pushed me to the limits of questioning the meaning to life. Life is unpredictable, painful, exhausting and I practically rattle due to my 20+ pills a day.
Diagnosis
I was diagnosed 2 years ago, so realistically, I am at the beginning of my treatment journey. However, my symptoms go back to being a child, and it was only due to desperation and a very deep hole of Googling that I correctly self-diagnosed and got a referral to see a consultant - I’ll touch on this part later.
When people hear the condition Arthritis, in my head most people will automatically think of someone elderly with a sore finger. That’s where I’d like to take this opportunity to educate that for the unfortunate souls with an inflammatory spondyloarthropy, these autoimmune diseases are anything but the common misconception.
Let's rewind...
I’ll start when I was 15/16. I developed bad scalp psoriasis during my GCSEs, was diagnosed with TMJ and hyper mobile joints, had hip surgeries to stop my hips from dislocating - “All part of being stressed and a growing young lady” I was told.
At age 18, 19, 21, I was admitted into hospital with inflammation in my sternum, spine and rib cage (Costochondritis) making it extremely painful to move, sneeze and breathe. The pain was like nothing I’ve felt before, and no pain relief worked.
For the last 13 years plus, I’ve been in and out of countless doctors’ appointments with recurring Costochondritis and widespread pain, each time told it was “just inflammation” and by a few doctors told I was a hypochondriac or mental health issues were creating the pain for me (good one guys!).
I reached a very low point in 2021, everything hurt, it hurt to breathe, my right-side eye would randomly balloon daily. I couldn’t move when I woke up for stiffness and pain and walking upstairs in my house felt like I was climbing Everest. I snapped. Not knowing what was wrong with me was becoming scary and my symptoms were getting worse every week.
Time to be a 'Google Doctor'...
One night I googled to every inch of my life for hours on end. I randomly came across a medical article (probably +150 link clicks in) which explained that one of the biggest causes of inflammation in rib cages / spine and sternum is Psoriatic Arthritis.
💡LIGHTBULB MOMENT. 💡
I googled some more and returned with a checklist of symptoms / medical issues related to Psoriatic Arthritis and matched to nearly all…TMJ, hypermobility, scalp psoriasis, costochondritis. Within minutes I knew this was what I had. I’ve never been so sure of anything. I remember sending a link to my mum with the articles and my mums simple reply of:
“This is you.”
I got an appointment through with a rheumatologist a few months later after begging for a cancellation. Within 10 minutes of being in the room with the consultant and my medical history I was diagnosed.
“I’m 99% sure you have psoriatic arthritis. It’s like rheumatoid arthritis’s nasty big sister. It affects your connective tissues, your organs, your skin - it’s systemic and yours is aggressive”.
For days after I didn’t cry with frustration, I cried with happiness. The feeling of validation that I wasn’t crazy, I wasn’t a hypochondriac and that my pain / medical history had a purpose was bizarre. Everything from being a child to now made sense.
Treatment
I'm currently on tri-therapy. 2 different immunosuppressants and a biologic medication - so far, I’m yet to find a treatment that works and saying it’s hard is an understatement. However, I’m so glad I persevered with the struggles.
The reality of having a chronic illness is tough. But we are tough people - we face pain everyday but still carry on. Pretty impressive if you ask me.
My message and point of this blog:
Don’t give up if you’re lacking (and needing) a diagnosis. Keep going if you’re trialling medications, I’m hopeful I’ll find my miracle drug soon. Keep smiling. And it's ok to cry. It’s hard, but we’ve got this.
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