You have to be proactive in managing your illness

Written by Amanda

I was diagnosed at the age of 37 in 2008, after 6 months of misdiagnosis by GPs and finally ending up not being able to get out of bed one morning and being taken to hospital as an emergency.

Diagnosis changed my life – physically, mentally, emotionally, financially and socially. I received support to sort out the physical symptoms (after a 3-week stay in hospital). I had physiotherapy, occupational therapy, drugs, but no real psychological support which is something that is a big gap in RA provision. Life can be a battle. It is a battle to get what’s needed in work, in healthcare and to try to enjoy life as best as possible.

After diagnosis I went through a cycle of grief – grieving for the person I was and the things I could no longer do. I had always worked full time and was determined to try and continue doing this for as long as possible. I had visions of being in a wheelchair by the time I was 40. However, mentally I am a very resilient person, despite having suffered from anxiety and depression since diagnosis, I was still determined that I wanted to carry on working. The cycle of grief was difficult; at first I was in denial and tried pushing myself too much too soon. Carrying on as normal when things were no longer the same or normal. When I finally had to admit I couldn’t do things, I had to learn how to ask for help, which as someone who has always been fiercely independent, was difficult. I also had to learn how to accept help. I had to get through the feelings of guilt I had when others had to do things for me. The feelings of rage I felt when I could no longer do many of my hobbies or when I couldn’t do the simplest of tasks because my hands or another part of my body let me down. The feelings of depression and loneliness when it felt like it was me against the world and no one understood, and everyone thought I had osteoarthritis like their nan. The sadness of my husband and kids’ lives being affected and changing too and it never being the same again. Eventually I learned acceptance, but it took a long time to get there.

For me and a lot of us, there’s something so fundamental about working which is also tied up with identity. A lot of us have roles – parent, friend, lover, carer, but we also have a work role and having re-trained years previously to go into education and teaching, I didn’t want to have to give up work at a relatively young age. Having work would help to support my family financially and continue to give us the life we wanted but would also give me a purpose and a focus and make me feel like I was a member of society.

There were still some rather unfortunate attitudes at the time with some people questioning whether I could do my job or not but having worked at the organisation for nearly 15 years now, I think I’ve proved I can!

I returned to work over 6 months after my initial diagnosis and at first there was quite a bit of support. Access to Work helped to put in place an ergonomic assessment of my workplace and worked with my employer to get reasonable adjustments put in place and specialist equipment so that I could do my job. There were still some rather unfortunate attitudes at the time with some people questioning whether I could do my job or not but having worked at the organisation for nearly 15 years now, I think I’ve proved I can!

Over the first few years my RA stabilised with triple therapy (methotrexate, hydroxychloroquine and sulfasalazine) and I found that all the adjustments meant I could do my job fine. However, there came a point after about 7 years post-diagnosis where all was not as good as it could be. My medications did not seem to be as effective as they could be, and the side effects were horrendous. I was also having steroid injections into some of my joints, but my consultant would not consider changing my medication for something stronger/more effective. It was only when I relocated to another area of the country that I met a consultant who was willing to experiment and try and find a drug more suited to me. Unfortunately, this has led to some medication failures, but this consultant was willing to try biosimilars and biologics. This showed me what a lottery it is out there in terms of what medications you will receive and what treatment/service you will get. I quickly learned that in order to get what you need, you have to be proactive in managing your own illness – you have to ring up and get appointments, ask for advice, get your blood tests sorted, challenge your consultant and make sure they understand if it is not working.

All RA is different, so knowing your own body, your own triggers, your own fatigue levels and what helps is all part of the learning process. Learning to pace yourself and being realistic is important.

I continued to work during this time and had one or two short flare-ups, but my most recent has put me off work for 6 months. There are things I have done over the years to help myself. I strongly believe in being able to advocate for oneself, so I have learned as much as I can about my condition, so I am able to challenge doctors and medical professionals if I need to in order to ensure I get the best experience possible for my RA. All RA is different, so knowing your own body, your own triggers, your own fatigue levels and what helps is all part of the learning process. Learning to pace yourself and being realistic is important. Adapting the way you do things, asking for help if you need it and knowing where to seek advice is important. In particular, for work, I have sought advice from my union, from Citizen’s Advice, from ACAS, from Access to Work, from my GP, from my Rheumatology team. I have also ensured I am familiar with workplace policies that are likely to impact on me, e.g. sickness absence, support whilst at work, etc. I have also made sure that I have spoken up about reasonable adjustments needed when I have been in post and when applying for other roles. When I have been off ill with my RA and have been referred for OH appointments, I’ve seen these as an opportunity to ensure that my side of things is represented. Some people are apprehensive about these kinds of appointments, but I have found that if you prepare in advance and know what to say about your illness and its impact on your job role, you can do your job with reasonable adjustments in place and set out a plan for a phased return, it all helps. I have always made sure my GP was aware of my condition and would support me when it came to having time off work and returning to work on a phased return.

I am registered disabled, utilise mobility and other aids and no longer have any concerns about what people think. If you need them, then I think you should use them, the same as not struggling in silence in the workplace.

Sadly, I think there is still a lot of discrimination against people with disabilities both in the workplace and everyday life. I think employers have a very, long way to go before there is true equality for people with disabilities in the workplace. It requires strong people to stand up and fight and for people to support them and advocate for them when required.

My aim is continuing working until retirement age. I have another 15 years to go, so I am halfway there and hope that with medication, stabilised RA and hopefully a change of employer I can continue to provide useful service and be valued for my skills, knowledge and experience like any other employee.

This article was taken from our Spring 2022 Members Magazine, NewsRheum. Get more RA stories, information on our vital NRAS services and upcoming events by becoming an NRAS Member today!

Want to share your story of your experience with RA like Amanda? Get in touch with us on social media via Facebook, Twitter, Instagram and even subscribe to our YouTube channel.