Hello there! You’ve somehow stumbled across my little place on the internet, welcome! Seeing as you’re here you may either be newly diagnosed with an autoimmune disease, have a close friend/relative with one, or you’ve clicked here by accident. As my first blog post ever I thought I would share my diagnosis story. It seems like only yesterday this all began, yet so much has happened! When I was in the midst of autoimmune disease onset and newly diagnosed I loved reading people’s stories, I was desperate to know other people’s experiences and advice, wishing I would feel less alone. My hope is, that by sharing, you feel comforted whether you’re a new member of the chronic illness community or supporting a chronic illness warrior (autoimmune diseases can be tough for close contacts).
First, I want to share with you the image above. I took it at my Grandad’s forest in Donegal, Ireland. Diagnosis feels a lot like this picture. The dense thickness of the forest is black, you cant see much, you’re deep in the forest, you feel so alone, like no one else understands. You may also be battling with getting a diagnosis or a medical professional to take you seriously. I felt like this on my journey to getting to diagnosis when I was in chronic debilitating pain. A short time after my diagnosis I started to see the clearing in the forest, I started to see the sunlight, the brightness, coming in. It was small cracks at first, when the steroids started to work a bit, when I suddenly realised I was starting to do things with a bit more ease, or when I found the chronic illness community online. You begin to edge closer to the clearing and more sunlight is visible, you get to grips with your medication and lifestyle changes, you find other people, you start to get better. This is the point I am at currently. There is some sunlight in the clearing. Sometimes its a cloudy day and that’s ok. Sometimes it’s cloudy for a couple of days, a week, a few weeks during a flare, but importantly there is still some sunshine in the form of loved ones help and support or seeing a post in the chronic illness community that I relate to. I hope that by reading my diagnosis story you can start to find the clearing, and more importantly the sunlight.
I often wonder if my disease started during the second trimester of my second pregnancy in November 2020. I was pregnant with my second little girl, due to be born at the end of February 2021. I remember attending a routine appointment with my midwife and being asked if I was experiencing any carpal tunnel yet (like I had with my first pregnancy). I thought it bizarre as just that week my largest knuckle on my right middle finger had been getting a little ‘tight’ and ‘achey’. I was convinced it was the start of carpal tunnel but looking back, if I knew then what I knew now … I would be adamant it wasn’t. Its easy to look back with hindsight, but autoimmune disease wasn’t something I had any knowledge or experience with. I did think it bizarre in the immediate few weeks leading up to the birth that the carpal tunnel hadn’t materialised into anything like my previous pregnancy, I considered myself lucky! I had a lovely few weeks health-wise for myself immediately after the birth, riding high on love and admiring our newest addition. Then it all kicked off about four weeks postpartum ….
It began in my left hip about a month postpartum. Then the pain continued down to my left knee. The pain was so bad I was limping around the house but I was convinced I had slept funny so soldiered on caring for my two girls. About a week later I woke during the night to feed my baby girl and my right arm was frozen in the most intense pain. The following night I woke again to complete a night feed and it was the same scenario again as the night before. Within 5 days I was bedridden, the pain, swelling and stiffness was in every single joint in my body. I could not move, lying still was agony. Numerous phonecalls to 111 and an emergency GP appointment later and I was diagnosed with (drumroll please) … ‘”poor breastfeeding position that was causing muscular skeletal pain”. I was given naproxen and sent on my way. Within 24 hours it was blindingly obvious that naproxen was not strong enough. Every morning was excruciatingly painful in every single joint and it would be dinnertime before the pain began to subside.
During this time I had already made contact with my GP who booked me in for a blood test to check inflammation levels. After my GP informed me it would take three weeks to get a blood test and receive the results, I took matters into my own hands and arranged to see a chiropractor/osteopath. These sessions would seem to give a little relief until I woke the following morning in more pain than I’d woken up in the previous day. By my third session they were already suggesting rheumatoid arthritis. I remember driving home from one of my chiropractor sessions, struggling to comprehend it all and beginning to think that this was my new “normal”. With hindsight it’s easy to see how I became very depressed. I lost count of the amount of times I cried to my husband that I couldn’t continue living like this anymore, I was suicidal.
Eventually my blood work came back showing very heightened levels of inflammation (ESR and CRP) and the GP instructed me I was being referred to my local hospital’s rheumatology department. I enquired what was wrong with me, the GP explained that we should hope it was a postpartum flare what would settle but worse case scenario we were potentially looking at RA. I was lucky enough to be given an urgent referral because I was struggling so much to look after myself, let alone my two girls and I was suicidal. I feel extremely fortunate that I was given an appointment very quickly (about a week after referral) and the GP administered me a steroid injection a couple of days before my first rheumatology appointment. At the time I didn’t see much effect from the steroid injection (I was still in excruciating pain and unable to complete basic self-care tasks) but with hindsight there it did take some of the edge off.
On the 14th May 2021 was the day I was diagnosed with RA. I remember leaving my girls in the car with my mum who had driven me and struggling to walk from the car to the waiting room (the top floor of the hospital and down a really long corridor!). The first appointment was surreal. I loved that first Doctor. She (along with a medical student) listened to my entire story, making brief notes, then asked me to jump up on the bed so she could inspect all of my joints in turn. I wouldn’t let the Doctor touch my hips because they were in such chronic pain. I will never forget the Doctor asking me “How would you feel managing this with medication?”, I replied “You need to give me something today or I won’t be here much longer. I cannot continue to live in pain like this.” She walked out to go grab some leaflets (she still hadn’t told me what I was being diagnosed with) and I turned to the medical student and asked “Is this RA?”, she responded “Oh yes, most definitely. What you have described is textbook”. The Doctor confirmed what the medical student said and that I would need to manage this with medications, quite possibly for life. I was indignant that this was something for life. The plan was to attend this hospital appointment, the Doctor would fix me by giving me some medications and I would never need to come back to rheumatology ever again. At the same time it was so overwhelming to be suddenly put on multiple medications (Sulfasalasine, Omeprazole, Prednisolone, Vitamin D plus painkillers), some were starting at a high dose and decreasing and vice versa, it was so confusing.
I ended up needing the Doctor to repeat the instructions four times. “Go for a blood test, go to pharmacy to pick up your medications, go home to eat lunch and take your first batch of tablets”. My mind was completely blank over what questions I should ask. I was given numerous pieces of paper and pointed in the direction of Phlebotomy, which I walked to in a daze. I felt like I had been hit by a double decker bus. Even now, I find it difficult to read the text conversation with my husband that I had with him as I waited in Phlebotomy. Having to tell a loved one of your new diagnosis and face questions over the unknowns of the future is really tough. I will never forget the size of the bag of drugs I left the pharmacy with that day, it was massive. I have never needed so many medications in my whole life.
Despite all of the above being distressing, I will never forget the first time I said the words “I have rheumatoid arthritis” out loud. It was to my mum, in my car, in that hospital car park looking out over all of the cars. The words sounded so foreign, it was like I was living a nightmare. Looking back, I want to reach out to myself and say “It will all be ok. There is hope. There is life. You can do this”.
If you’re still reading this, you’re a saint! Well done for getting this far! If you’re living with this disease, I can absolutely promise you it does get better! Medication has come a long way in recent years. As I type this I am in my worse flare since diagnosis but I can promise you, it does get better. It does get easier. You’ve got this. Trust me.
Keep seeking the sunlight!