"Rheumatoid arthritis may affect every part of my live, but that does not mean my life is over."
Oct 16, 2018 • 4 comments
Rachel was diagnosed with Rheumatoid Arthritis five years ago and had to quit her job due to her disability. However, Rachel has gained strength from her disease and has made her affliction just a tiny part of her warm and unique self.
Hi Rachel, can you please introduce yourself in a few words?
Hi, I’m Rachel Tait. I’m days away from turning 30 and I live in the North East of England. I’ve been married to my wonderful husband Dave for four years and we have a rescue dog named Blue.
My working background is in Forensic Psychology. I studied it at Masters level and worked to rehabilitate offenders both in the community and in prisons. I loved this work, I am still extremely passionate about it, and found it very rewarding and challenging in equal measure.
Unfortunately, my health meant I had to stop working in forensic settings due to declining mobility, but I went on to focus on the community aspect of this work. Sadly, I lost my job due to disability in 2016. I challenged it at an Employment Tribunal and this sparked an interest in Law, Employment Rights and Disabled Rights. I went back to university in 2017 to study Law part-time and I hope to one day use this to help improve the lives of disabled employees, or disabled people seeking employment.
Tell us about your Rheumatoid Arthritis: in what circumstances and at what age were you diagnosed? What symptoms were you experiencing prior to diagnosis?
My journey with Rheumatoid Arthritis began in 2013 when shortly before my 25th birthday when I started experiencing wrist pain. I visited my doctor who did very little about it and proceeded to tell me the pain was in my head. Wrist pain soon turned into all over joint pain, this was followed by crippling fatigue and I basically felt like I had the world’s worst hangover every day. It was a scary time and getting a diagnosis was a nightmare. I saw many medical professionals over the next year but several refused to believe me when I discussed my symptoms.
Eventually I was referred to my Rheumatologist when one doctor finally listened to me and realised I also had a family history of Rheumatoid Arthritis (my Mum has Rheumatoid Arthritis too). In November 2014 I began seeing my Rheumatologist and in January 2015 he made the diagnosis of Seronegative Rheumatoid Arthritis.
Were you aware of this disease before the diagnosis? What was your reaction to the diagnosis?
I was aware of RA before my diagnosis because, as I said above, my Mum has it. She was diagnosed in 2012 and I had witnessed first hand the symptoms she suffered and how much Rheumatoid Arthritis had changed her life. To be honest in many ways this didn’t make it any easier, if anything it made me more scared because I already knew the reality of what I would be facing, and I wasn’t sure I could be as strong as my mum is. It did also help though because I had someone to talk to about it who understood exactly what I was going through. My mum was already one of my best friends, but I think having her there to share her experiences and to show me how to handle the condition with strength and grace really helped me come to terms with it.
I was really angry about my diagnosis for a long time and it’s taken me years to fully come to terms with it. I don’t think the grieving process is ever truly over because there will always be moments where I remember what life was like before Rheumatoid Arthritis and wish things could still be that simple. I had to grieve the loss of my health and deal with a life changing diagnosis at 25 years old. I felt like my life was just starting and then suddenly it seemed to be over. This was massively amplified when I was unable to keep working and, again, it took me a while to bounce back from that.
I was diagnosed five months after I married my husband, so I also had to deal with a lot of feelings relating to that as well. My husband is an incredible man, who has supported and loved me through all of it unconditionally, I am very fortunate. However, we were newly married and that alone is a period of learning. To have an incurable illness thrown into the mix as we learned to navigate married life just seemed so overwhelming. If anything, though, I think it strengthened us, and our marriage. We had to grow up perhaps a little quicker than planned and we had to have some really difficult conversations but we learned how to communicate so well because of that. Dave understands me, and this illness, inside and out. We haven’t let Rheumatoid Arthritis define our lives, we have just learned to adapt to live around it.
What was your initial treatment plan? What were the results? Did you have any side effects?
Oh gosh, I was put on quite a few different things and it took a while to get it right, but that is to be expected. I am so fortunate to have an incredible Rheumatologist who listens to me and works with me on every aspect of this illness. I think in the early days of treatment what stands out is all the tests I had to check that various organs could hack the medications. It was scary having to weigh up the risks against the benefits of different treatments and drugs. I had a lot of side effects with most medications I tried, including the ones I am still on, but they subsided, and they were worth it in the end. The worst was probably nausea, I hate that feeling and it just made me not want to move at all for fear of throwing up.
Are you currently on any medication? How often do you see your doctor and are you satisfied with the care you are receiving?
I am now on a combination of Hydroxychloroquine, Sulfasalazine and Etoricoxib. They work really well, and my disease is fairly well managed, save for the flare ups. I’m on some other medication for my Trigeminal Neuralgia and I also take various combinations of painkillers depending on what level of pain I am in that day. I see my Rheumatologist every 3-6 months, or more often if I need to. I see my Rheumatology nurses every couple of months for a check up and my regular blood tests which are needed because of the medication I am taking. I also have access to a Rheumatology Physiotherapist when I need her. My walking sticks, and any replacement parts from come her. I also have an Occupational Therapist who I see about once a year to get new splints, gloves and any aids I require.
In what way has Rheumatoid Arthritis your lifestyle and your daily activities (your work, family life, etc.)? What was the most difficult thing to cope with?
Rheumatoid Arthritis has an impact on every single part of my life, but that doesn’t mean my life is over. It was a process to adapt to life with Rheumatoid Arthritis, but I think I manage it a lot better now than I used to. I am unable to work currently due to my condition, but I started my own website and blog two months ago, where I talk about life with Chronic Illness and Disability Discrimination among other things. I’ve found that doing this has given me back some structure in my days and helped increase my motivation. It has had a really positive impact because I feel like I’m contributing something to the world again.
I really struggled when I lost my job because I felt like I was watching my life pass me by and not doing anything worthwhile. I think it’s important for everyone with a chronic illness, like Rheumatoid Arthritis, to find something they’re passionate about to help give them back their sense of self. I didn’t really have any hobbies, but I love writing so I used that.
My Rheumatoid Arthritis means that my mobility is affected and that can be really challenging and was a huge adjustment for me. My condition also had a huge impact on my relationships because sometimes people can’t understand why “you” suddenly changed and can’t do everything you used to do. I lost some friends because my health had to be a priority and I couldn’t just drop everything for people anymore. I also couldn’t always make or keep plans which I know some people found difficult or frustrating. My closest friends understood and supported me through it all though, I am incredibly fortunate to have an amazing support network. I also have new friends who have only ever known me with Rheumatoid Arthritis and they just accept it as part of me and love me regardless.
I am also really fortunate to have an incredibly supportive family, both my own and my husband’s. They are always on hand for emotional or practical support and we are so surrounded by love. As I have said, it was a huge adjustment for my husband and I to come to terms with a huge life change like my illness but we have an incredible relationship and we don’t let it stand in our way of living the life we want to.
Have you ever participated in clinical trials? If yes, can you please tell us about this experience? If not, would you like to do this in the future and why?
I haven’t participated in any clinical trials, but I certainly wouldn’t be opposed to it. I would have to weigh up the risks and the particulars of that specific trial, but if it meant potentially helping other people battling Rheumatoid Arthritis then I would be very open to it.
What would you recommend other people affected by Rheumatoid Arthritis?
I think the most important thing I’d recommend is being kind to yourself. I wasted too much time beating myself up and berating myself over something I had absolutely no control over. I made it more difficult for myself, when I should have been treating myself with love and kindness. I’d also say give yourself time to grieve and never feel pressured to just be okay. Life with Rheumatoid Arthritis is hard and coming to terms with the diagnosis is hard. It’s okay to feel however you are feeling and it’s important to let yourself go through that process. There are still days where I just need to cry or scream or rant about how unfair it all feels. All that matters is that once you’ve let it all out, you get up, dust yourself off and find your positive focus again!
I’d also say don’t waste time on any toxic or draining relationships, your energy is in short supply so invest it wisely in people who love you for you. Also, don’t waste time sweating the small stuff, do what makes you happy and invest your energy in things that bring you joy. Don’t be hard on yourself when the house is a mess, your washing pile is sky high or you have a to do list that is never ending! Life is short, and we need to try and not be so hard on ourselves when we are doing the best we can.
I’d also say rest and listen to your body. This isn’t always possible I know, but as often as you can make time to rest and be kind to your body.
I think finally I’d say, you’re doing amazing and everything is going to be okay. This diagnosis is life changing but it doesn’t mean your life is over. You will rediscover who you are, with Rheumatoid Arthritis as part of that. It doesn’t define you, it is a small part of everything that makes you who you are. Try to remember to find something good in everyday, even if all you did today was survive, that in itself is incredible. Rheumatoid Arthritis doesn’t make you less, it makes you strong and it makes you a fighter. You matter and you’re important in the world, so don’t let anyone, including yourself, tell you otherwise.