The lump in my throat grew and I gave a half-smile, hoping that would satisfy their need to know I was ok. I prayed they would look away before the tears stung my eyes and escaped down my cheek. I stood at the edge of the lake watching them play and laugh. They hopped in and out of the little boat with ease. I tried to be happy for them, but instead I just felt sorry for myself.

You see, I was having a flare-up and even making it out as far as the lake was a big deal. However, in that moment I just wanted to be able to forget about RA. To jump, and laugh and play like the others. I was 26 years of age and I didn’t have the energy or capability to get in and out of a boat.

So, yet again, I stood at the edge of that lake and grief waved over me again. Grief for the me that could have been. For what must be the one-hundredth time I grieved for the 26-year-old, the 15-year-old me dreamed about. And not for a second, did she ever consider the physical struggles the real 26-year-old would face. She dreamed of being a writer, a teacher, an interior designer, of travelling the world, partying all night with her friends and getting up the next day to do it all over again.

At 15, all those dreams changed, even if I didn’t fully realise it then. First, there was a twinge in my knees. Next it was difficult to move my fingers, open doors, walking became difficult. I was terrified so I tried to bury my head in the sand and hoped that it would just go away. I had never experienced something like this before. Of course, my parents noticed a change in me and made me go to doctors. A lot of blood tests, x-rays, MRIs and hospital appointments later, I was told I had rheumatoid arthritis.

I didn’t grieve then, because I don’t think I understood the severity of it all. I was sure I was going to get medicine and in a few weeks, maybe months, I would be right as rain and back to normal. That is how doctors and medicines worked. They fixed you.

That wasn’t the case. ‘Manage’ and ‘lifelong illness’ were the words thrown around. I remember hearing them and I also remember discarding them to the back of my mind.

My life had changed, but I lived in hope that medicine would cure all. It definitely helped at first. Still my day to day life was very different. It wasn’t until my leaving cert year, I began to grieve for the future me I had lost.

Sitting on my bed with my arms raised as my sister put my t-shirt on me like she was dressing a baby. A big, adult-sized baby. In that moment, I think I grieved for the first time. It just hit me that I was never going to have the life I had imagined and I was never going to be that carefree teenager that took her health for granted again.

I didn’t understand that it was grief at the time.

I thought grief was something you experienced solely after losing a loved one. I never realised you could grieve for other things in life, your marriage, your job… your health.

Due to my health, I watched all my friends go to college and I was left behind. I had dreamed of college for as long as I could remember and, yet again, my health was holding me back. I just wasn’t in a place to go full-time. That stung.

College was all I ever wanted. I don’t think I had really even thought past that point. I just knew I loved learning and there I would be given a wealth of knowledge and inspiration. Instead, I was at home, trying to become well enough to go to further education full-time.

Since then, I have grieved many times for the me that was and the me that was going to be. I won’t ever climb Everest, I won’t ever be the strongest person in the room and my life is harder that most at 27 years of age. And like grief for a loved one, I have come to the point of acceptance.

I have accepted that this is my life, I go further to say I think I have embraced it. I write about my experiences of living with this illness, both the sad and funny (yes, there can be humour in it all). I volunteer with arthritis groups and try to help others come to terms with their illness in any way I can.

I also got well enough to go to college and get my degree; one of the proudest moments of my life. Being able to achieve that showed me how much is still possible with this illness.

So most days, I don’t grieve, not after 12 years of having RA, I just get on with it. It’s my new normal. To be honest, it has been this long that I don’t really remember much of a way of life without it. It is just a part of me. And in honesty how I deal with it, how I have dealt with it taught me so much about empathy and respect and humour. I truly believe it has ultimately made me a better person having to go through my teens and 20s with this hurdle to overcome time and time again.

Still, there are times I sit on my bed trying to get dressed, slowly, in pain… or a moment where I am standing on the sidelines, watching my friends play fight, or that day when I have to call in sick... that the grief hits me.

It knocks me for six, right in the chest, and I can feel the tears about to sting my eyes and the lump in my throat. In that moment I am taken back to sitting on the bed at the age of 18 while my younger sister dressed me. It might be a few minutes or hours, but it feels like I have to go through the whole process again.

Time heals all wounds.

Whilst no amount of time will heal me, cure me, fix me... it does help. Time makes it easier to cope with. Time may not have completely healed my wound, but it has eased the pain. Hopefully it will continue to as I grow older and wiser I become more and more confident that, sure, I have arthritis...

But arthritis doesn’t have me.

 

A positive new chapter began in Gloria’s life, when on 4 April 2020 - in the height of the pandemic – she and her partner, Aidan, welcomed a beautiful baby girl, Lily, to this world.

For me being a mom with RA, the scariest part isn’t raising her while living with this illness, it’s the fear that one day she will wake up like I did 14 years ago and be in pain and I won’t be able to kiss it better.

 

We need your help to enable us to continue supporting the people that need us the most, people like Gloria and her family.

Please support our National Raffle 2020, so that we can continue to battle arthritis and support people living with this devastating condition, like Gloria – through Covid-19 and beyond.