One of the most unbelievable things about Rheumatoid Arthritis (RA) is it’s Mr India’s act and it is an invisible illness. You may be having a severe flareup and constant pain but your face will not show the turmoil at all. People will find it very hard to understand or believe that you are undergoing hell just because you don’t look the part.
Rheumatoid arthritis (RA) wages invisible battles daily.
My life with RA during the severe years was walking through a minefield. I never knew when the next flare-up would strike. Even getting out of bed, showering, or holding a cup of tea – became hurdles. It was terrible, to understand that my spontaneity vanished, replaced by a constant anxiety about what my body might allow me to do that day.
I could not fathom the depth of the emotional impact of RA. Day by day, I lived the frustration of watching my body betray me, the grief of losing the life I once knew, and the fear of the unknown future. At each moment I was mourning the loss of my independence, physical capabilities, and the carefree life I once enjoyed.
But amidst the pain and despair, there was my stubborn resilience to overcome this invisible illness. There was the support of loved ones, and the determination to find joy in the small victories. There was the power of self-care. Living with RA is about finding ways to cope with the physical and emotional challenges, while still finding joy and purpose in life. Yes, through the painful years, I have learnt to recognise my strength and celebrate the small victories over this invisible illness.
You don’t know how strong you are. Till being strong is the only option you have.
This blog post is about my personal experiences and may not be representative of RA in general. However, I hope this blog post resonates with you.
Struggle to legitimise my Invisible Illness
I remember those dismissive reactions so well when my neighbours, extended relatives and others refused to understand the severity of my condition. Explaining things or showing how my joints refused to bend or straighten was exasperating. No amount of ointments or massages could really make the pain disappear. RA victims live the horror every minute, I did too. The horror of reactions from people that conveyed ‘ this is an everyday condition” or ‘her pain is here to stay’.
I tried to act normal
Such a dismissive attitude made me wear an invisibility cloak, I tried to mask my pain and forced myself to act normal. It was all-important for me to finish the daily tasks like a healthy person. I did not want others to feel I needed sympathy at all, understanding yes, I craved. Being a person who had never depended on anyone, it was very difficult to ask for help or speak about physical difficulties about my invisible illness.
It was easier to try harder and act like a healthy person. But deep inside I felt the need to legitimize my chronic illness and shout that just because I don’t look sick, did not mean I was not struggling! I desperately felt the need to prove that I was sick on although I looked good on the outside.
Chronicling the Invisible illness experience
Technically my diagnosis was in 2000, but the extreme problems started in 2002 and proper treatment in 2006. I’ve been living with Rheumatoid Arthritis for 25 years. The years of extreme severity was from 2003 onwards. From 2003 to 2006-7, except for periods of remission, my life was torture. Since my actual treatment started in 2006, I started on my long route to recovery in 2008. You can say that I lost seven to eight years of my life to the wrong medication and treatment of this invisible illness.
How RA took a toll on our life
Physically, mentally and emotionally and yes financially, I broke up. The worst part was my family members lived the horror and pain with me. My life then was a long SOAP OPERA of severe pain, trauma, depression, and meaninglessness during 2005 onwards Today, the nightmare of those years have dimmed and it’s hard to keep track of all of the treatments and all the painful moments I went through.
Years 2003 to 2006 with RA most painful, most meaningful
I wish to talk so others can get an idea of what it’s like to live with RA. The invisible illness is extremely debilitating during pregnancy and lactating mother. People often don’t understand what it’s like to live with it or how treatments impact the life of RA patients.
Watch out for my next blog