My New Normal – Living with Rheumatoid Arthritis
I remember saying to my husband, “I don’t remember what it feels like to be pain-free.”. I still don’t.
In 2014, I was diagnosed with Rheumatoid Arthritis 10 months after I got married and two weeks before my husband and I were going to travel the world for our honeymoon. It was a huge blow. Being diagnosed with an autoimmune disease with symptoms that came so fast and furiously out of nowhere and because the doctor said that we had to cancel our 12-month honeymoon trip.
An RA diagnosis is like a rollercoaster ride
With the diagnosis came the daily medication, the monthly blood tests and a lot of pain. What they don’t tell you at diagnosis is the rollercoaster ride you’re about to board.
Accepting it took a lot of time
I struggled, a lot, for years after the diagnosis to accept my condition. I just didn’t want it. With the pain, came depression, anxiety, tiredness and loss of enthusiasm for everything. It felt like it broke me as a person. Once ever positive and loving life, to now struggling to get excited about pretty much anything. I mourned my old life. I never spoke of my pain, my disease, my depression, or my feelings to anyone, not even my husband.
What ensued was a vicious circle
I found myself comfort eating to help me feel better, however, I gained over 20kg. My pain became worse, the quality of my sleep was ruined, and it killed my physical and mental health. I turned back to food for comfort, which restarted the decaying circle one again.
We rebooked our honeymoon trip around the world six months after the original date. For the first few months of the trip, I struggled to find any self-confidence in the way I looked. Being on a postcard beach in Mexico surrounded by beautiful sand, sea and people was a constant reminder of my shame. It was hard. Worse still was the struggle to partake in any physical activities.
But, as the months went on, I found a new bounce in my step!
The road to emotional and mental recovery
I often think back to what changed during that time that led to my road to emotional and mental recovery.
While travelling demanded long hours with little sleep, I had a lot of energy. My diet had changed, there was no junk food but a lot of fresh food with a lot of vegetables and the physical demands increased, which together drove my weight down.
Accomplishing my bucket list took priority
I accomplished so many bucket list items while travelling that, in some way, I had originally written off because of my disease. I climbed volcanoes, learned to free dive conquering my fear of deep water, completed an intensive boxing boot camp, got my PADI certification, camped in wild safari parks without walls, came face-to-face with a great white shark cage diving, completed a military-style obstacle course and many other things.
I had no pain, I stopped my medication, and I was feeling great! I thought, how amazing is this!
By the end our amazing 15-month trip, I was back and healthier than ever! I felt so good, and my mind felt fresh. But… it didn’t last long. Within months of being back home, I slowly started slipping into bad habits.
Slipping back into my habits
Constant pain was back at my doorstep with no intention of leaving. I found myself crying when I was alone. Even though I knew that I needed help, I didn’t know where to turn, who to turn to, how to speak about the way I was feeling or even how. I didn’t like what I had done to myself. I was ashamed to say that something inside felt wrong but I was struggling to say what. I was scared to show my vulnerability. This wasn’t me and I knew that, but it’s who I had become. I was torturing myself by holding everything in. My husband tried many times to help me find ways to a better life but I couldn’t find the willpower to make the change but I knew I had to.
I spoke up about the way I was feeling
I finally built up the courage to speak to my husband about it all; the guilt, the frustration, the depression, the anxiety, the mood swings and of course the pain. He was so appreciative that I’d finally opened the doors and let him in. My husband reminded me that despite my RA, I had achieved so many things I thought I would have been unable to do and that I am capable of achieving so much more. It was only now that I had accepted that I had this autoimmune disease. I realised that I could choose the definition of my what became my ‘new normal’.
Adapting to changes this year
In 2020, COVID brought the world to its knees. During lockdown at home, my husband suggested that “we should try the Keto diet and start a workout regime, where we can support each other”. And we did. Three months in, I’ve once again noticed a huge change in myself, physically, mentally and emotionally. As I’m writing this, I do have a flare up on my elbow, and as painful as it is, I’m not going let it bring me down. I know what I have to do to evict Mr Pain!
Recognizing my successes and appreciating support
The journey since diagnosis has had a lot of ups and downs. I have accomplished a lot that I never thought I would, but I’ve also seen the dark side. I realised for myself that diet and fitness truly make a huge difference to the way I feel physically and mentally. I feel a lot stronger in every way. Speaking openly has given others an insight into my world and an appreciation. I’m so happy to say that I am now more open about my Rheumatoid Arthritis. My husband is incredibly supportive and is always there when I need him. While he is good at many things including beans on toast – I still struggle to take a back seat when it comes to cooking!
Going through this journey helped me overcome my blockers and allowed me to accept who I am.
I finally found my way to a better life and created a channel on YouTube to motivate and inspire others who may be feeling the same, or are in a similar place that I was: https://www.youtube.com/channel/UC8xT7MfpyMnxduWfuQc7Hlw
Written by Sejal Datta
When was your last flare?