Imagine seeing someone who attends a yoga class, goes to the gym, swimming, and runs once a week. Someone who is of a slim build, with glowing skin. Someone who rarely has infections and never takes antibiotics. Always seemingly on the go and full of energy.

Now imagine seeing the same someone with an elastic band wrapped around their fingers on both hands, a weight strapped around their right knee and hip, and a rod taped to their spine. I dare challenge you to at least try moving your fingers with an elastic band wrapped around them and see how long you can manage this for. This is what it feels like to live with an autoimmune condition like seronegative rheumatoid arthritis, chondromalacia patellar, and a chronic pain condition like fibromyalgia, but we don’t ever have the option to take off the elastic band, weight, rod, or tape. I sleep from 4.5 to 7 hours a night at the most due to pain and stiffness. If I wake early and can’t get back to sleep, I simply lie and rest in bed. 

I have never really touched on or fully shared what it feels like to live with long-term conditions that affect both my joints and nerves, so this feels quite vulnerable, but important to share. Part of me wanted to prove that I can achieve what I want in life and live my life to the fullest to those who see long-term conditions as a roadblock with a big ‘Stop’ sign. Part of me wanted to keep the difficulties of living with these conditions to myself because it makes me emotional when I talk about what it’s really like to have to constantly manage my conditions, especially pain and stiffness on a daily basis, to manage appointments that are a distance from where I live, to make sure I take and have enough medication, pick up my hearing aid batteries, go to a gym that is in another town because it is the only place with the equipment I need to use, and so on. I also don’t want my family and friends to be constantly worried about me and if I am ok. I also want to enjoy and live my life to the fullest. The difficulties of living with long-term conditions makes you appreciate your life and just how precious it is.

It’s not just the physical aspect of living with these conditions; it’s the mental load. My mind is in constant ‘planning’ mode. Burning the candle at both ends or rushing to do things at the last minute are simply not an option. My day-to-day life has to be planned and paced. Appointments need to be arranged and spaced out. Accessing services and getting the medication I need, especially medication I don’t take on a daily basis, continues to be one of the biggest and most tiring challenges I face. Social events and workouts need to be planned and spread out, so I don’t do too much in one go. I even schedule in my physiotherapy exercises around my workout days, so I don’t overload my right knee in particular. I have to make sure that I follow a healthy diet, drink enough water, and rest as much as possible. Even with all this careful planning, my conditions can unexpectedly flare up without a clear trigger. 

So, why am I sharing this with you now? I’m not sharing this for pity; I am sharing this for education because I know so many people living with long-term conditions who don’t share what it’s really like to live with conditions and disabilities. This really came to light to me when I saw the number of people who had to shield during the pandemic and I had never known that they had a chronic health condition. They just did not talk about it. I am also sharing this to educate those who lack knowledge and awareness of long-term conditions and how they impact on the people living with these conditions.

Friends have asked me how I became so strong and resilient. I would say having long-term conditions has definitely shaped me into the person I am today, and I am immensely grateful, thankful, and appreciative of this. Going from being one of the fastest runners in my school to not being able to physically walk or put weight on my right leg, and having to travel to and from university, do my own cleaning, washing, ironing, food shopping, studying for exams, completing assignments, attending blood tests and appointments on a weekly basis, which were a distance away from where I lived, all on walking aids has all built my mental strength and resilience to deal with not just my conditions, but any situation in life. 

It has also taught me a great deal of empathy, how to organise myself, and the reality of just how hard it is to live with long-term conditions. I love my life. I love being with my family and friends. I love working. I have always loved sport, especially running. The honest truth is that I will never be fully well. I can only be as well as I can be on a particular day, but will I ever let this stop from doing the things I love and achieving what I want in life? Never and neither should you. 

Nadia Bousseau

Instagram: @runningwithnadia