How to Live Well with Seronegative Arthritis in 2020

My journey to becoming a coach and helping others began when I became unwell myself, losing the ability to walk due to seronegative arthritis. As part of my mission to continue to make a positive impact on the lives of those of us who have a chronic disease, I recently took part in some research. Conducted by the University of Liverpool, I was interviewed by Jacqui Whitford-Stark, and below, is an exert of our interview. I hope it provides insight and awareness of how I have managed and lived well with seronegative arthritis.

Before Seronegative Arthritis

1 – To begin with can you tell me what your life was like before your diagnosis?

Before the diagnosis I was very active, I had a young son and I was recently married. I was part of social clubs and sports clubs, so I kind of found myself to be, you know, I was in my 20`s I started to get more aware. I started to look after myself better started to be more social, came out of university into work. Then I started my own business, so I had to make a concerted effort as a small business owner to be more social outside, but yeah, I was relatively athletic, I had hobbies and I was fairly easy going.

2 – Can you tell me what it was like after your diagnosis?

Erm, so, initially I very much struggled, I was diagnosed in hospital. I had, my joints had flared to a point where I couldn’t physically move, I spent 4 weeks in hospital while I was diagnosed and treated to get into a settled place to be discharged. I did find it very difficult. I was referred straight to intensive physio and straight for hydrotherapy. I had acupuncture and other physical therapies, which to be honest with a mindset of really wanting to get back up onto my feet and get moving again and get my quality of life back to as good as it could be I feel the NHS supported me physically, a lot, I’m very grateful that. Naturally, I was then discharged, I did find it difficult, mentally, to go from being physically able and disease-free, to then go to having to be helped to shower and do basic functions. I also lost the ability to very easily go out and socialise or even go for a walk to clear my head and I turned into a bit of a hermit. I was able to carry on my business from home luckily because 95% is on the computer and I was so grateful for that. If I had been doing a manual job I would have been looking at long term sick. Looking back, I was very happy with the help I received physically, I struggled to use crutches because it also affected my wrists and my shoulders. So, getting my mobility was a case of very small increments, small gains, getting back onto my feet, getting a gait that was effective. At first, my gait was compromised that left me in additional pain which was then x-rayed then there was concern that I may have had as, but thankfully that was not the case, it was just compacting due to my gait. I think the big thing that really affected me was mentally, erm, I did struggle as a, in some ways a proud man, to go from looking after my son and being very active and helpful around the house to suddenly not being able to do the housework. Having to ask the friends and family to come and help me with, to do things I could not do for myself. Losing that independence, I struggled quite a lot with that at first. Also, they initially thought I might have reactive arthritis before the blood tests, so there was an element where the doctors were saying, you will be ok, you’ll be better in a month. Then came actually no, you have rheumatoid arthritis erm, it’s going to be a chronic ongoing illness. So, I had to shift my mindset from ill be fine in a month too I’m going to have this for the rest of my life erm so mentally I did struggle.

I was isolated because I couldn’t get out and about, I was isolated because my business wasn`t a social one. The social elements I had intertwined before, I couldn’t really attend in the same way. So yeah, I think for about a year my mood was low, I felt elements off frustration and resentment; why me? why so young? I had looked after myself previously. Now looking back, I realise that I probably had flare-ups in years previous, but put them down to sports injuries. The signs were there I suppose but, it’s very easy when you are young to think you are indestructible and to not think about the stiffness in that kind of way.

3 – How does your illness affect your daily life?

I have spent the last 4 years trying to extract as much of my mobility and my pain management and my general stiffness, erm to live a well as I can.  I feel I have literally turned myself into a walking experiment. I have spent a year experimenting with my nutrition, seeing what food makes me flare what would make me feel better, and documenting it. Experimenting in different forms of movement and stretching and different forms of exercise to see the things I am limited in, what I can’t do anymore, in terms of physical exercise and certain sports. I kind of really took the initiative to try and get my quality life back to almost what it was, within the limits of my conditions.

I have found many things that help me meditation in the mornings gives me a chance to loosen up and it seems to work quicker than just sitting there wishing it does!

I try to input positive things into my mind I feel that that reinforces that if you are going to live in a positive way you can’t be thinking negatively and pulling yourself back, you are going to have days where you feel a bit down but, using gratitude to realise this is all part of the journey and you are going to find yourself having difficult times, but, really there are other sufferers who are a lot worse than I am.

4 – How do you feel about your illness now compared to when you were first diagnosed?

I’m in a position where medication does control my seronegative arthritis I have not had a flare-up for a few years now I have got myself to a point where I have routine my life where I don’t actually, really think about it every day.

I kind of see it now as, at the time I felt it had taken something away from me, in almost some ways now, I feel it has given something to me. I’m a much more grateful, much more grounded as a person. I’ve come to understand that managing something like this is a responsibility and I’ve taken the accountability to do that and in doing that I’ve become a more rounded person its actually been something that’s developed the way my mind works I look at the world. I think in a strange way, it has its difficulties, but also it has helped my own growth.

5 – How do you see things changing in the future?

I kind of see it as, I’ve been disabled for a few years now, I want to keep it in that place of stability so I can continue to live my life at this, you know, level of activity and movement and enjoying myself. I know there will be future erm, future developments, possible changes in medication. I’m looking at reducing my medication so it has less overall impact in the long term. I’m in some ways quite excited to what the future might bring, I definitely feel that again the physical help is great but I’ve really taken a passion towards the fact that the mental help is not there in the same way. If diagnosed at a young age, you don’t have the life experience to absorb the mental impact. I found that difficult and I appreciate that other people in a similar demographic as me would also find that difficult. I talked to a person who sort of had the same story as me, and he suffered psychologically after his diagnosis, the same as me. I feel the future going forward looking after the psychological aspects of the disease as well as the physiological aspects of the disease is where the biggest development should be.

6 How have your support needs changed as a result of your illness?

My support needs changed in terms of my daily life, significantly, at first, and still to this day there is a slight element but, I feel I have managed to adapt a lot of things I could do before, so I can still do them independently.

7 – Who are the people you feel support you or help you the most?

I was heavily dependent on my wife initially, to help me get around and to do things naturally as a young man you can be quite hot-headed and try to do things for yourself I quickly realised there are things I can do but if you push yourself to far…. one day I tried to shower myself and fell over, so yeah, I did push the boundaries which in some ways you do need to do that but you need to be mindful.

8 – How satisfied are you with the support you have from family, friends, and so on?

My parents and wife`s parents I have been very supportive in helping my life running and keep operating. That it was good to have a support network around me at the time, there are people out there who don’t have that network life must be very hard for them. I think my friends and family being local enough to visit and help kept me sane and kept me going. The emotional support from my family, the practical everyday actionable things that they were doing for me helped me to continue living my life.

9 – How satisfied are you with support from medical professionals?

The physical support was good from the NHS. At the time of diagnosis, I got a lot of support from the seronegative arthritis department and the physiotherapy department at the hospital. I was there quite often, they really took my feedback and tailored things for me the way I need them to be, I was very grateful to them. 18 months into my illness I finally decided to speak to my GP about my emotional health and I explained how I was feeling mentally; the challenges I had faced and how I was trying to move on but I was still struggling in certain areas. I was referred to counselling and I did have one session which really unlocked the last few bits of the chain for me to really push forward and made me dig a bit deeper and feel a bit more settled. I found I just needed to remove the element where I was still feeling a little bit of grief for the mobility I used to have before my illness. I was looking at things I couldn’t do anymore, instead of things I could do which were similar, for example, I used to play team sports before, now I was not able to play team sports at a certain level. I was not physically able to do that now. I still needed a way to satisfy being part of a team the competitive element of things. So, I went to play for a disabled football team, and now I coach the team.  It was a case of unlocking the, right if you can’t do this, what can you do that fulfils the same needs you have. That really gave me clarity, I was kind of heading in that direction I just needed the external help to make me dig deeper to question me. I found after that I have been on an upward spiral, it really helped me.

Adjusting to Life With Seronegative Arthritis

10 – If you were to compare yourself to others with rheumatoid arthritis, how well do you feel you have adjusted?

Compared to people that I know, I think my adjustment was slow initially, as in I was just adjusting to things physically, not adjusting to things mentally. I feel I am at a point that I am lucky the damage I have is not as significant as others I know. I feel most people I’ve met have adjusted well. I have met a few who haven’t adjusted mentally, after the initial period, so yeah, I like to feel I have adjusted to a higher-end but it wasn’t the case initially., I really struggled. I suppose, if I look back probably with me being younger, but also coming from a higher level of physical fitness, that went within a week. It was very difficult to catalyse this too but the consultant said this level of physical fitness helped me get back onto my feet again, to gain my mobility. I feel I adapted to a high level.

11 – To what extent would you say you still feel like you lead a full and normal life?

I feel I am able to lead a normal life, I am able to walk, I can`t run, but running is ultimately optional. I am able to drive now which I couldn’t initially, I can drive an automatic car, without adaption which is great. I can play with my children, there are a few things I have to adapt because of my knees, but I don’t see things I can’t do, I can always do something similar. I have recently started some boxing training because the part of the issue I had when I relearned to walk was the connection between my hands and my feet. My consultant suggested dancing or boxing training, this works hands and feet in tandem, now I go to a boxing club and work on my footwork and my arms, naturally I’m not punching anything physically, but I’m doing all the footwork and the hand movements, they put me in the ring and tell me to do a certain shadow box, so I have to then adjust my feet and my hands at the same time, so it’s like dancing.  There are others who don’t like contact so you have partners to dance around the ring with, it’s interesting because even the actual boxers need to do this, its all about how not getting punched. You need that control of your hands and feet. It’s an alternative kind of therapy. Its really helped coordination between my hands and feet.

12 – Based on your personal experiences, what advice would you give someone who has recently been diagnosed with rheumatoid seronegative arthritis

I would preface it with the fact that you have to go in with an expectation that you are going to have some challenges along the way, but that is very much reminiscent of life and its, it does take some acclimatisation. I could show a level of compassion and vulnerability at having been there myself, the initial stages are difficult but it definitely gets better as you learn more about seronegative arthritis.

I would advise them to do their research, and to see what works for them, to really experiment and take ownership of the condition. You need to understand that your body is constantly evolving and changing, with an immune system that is active in this way, it brings fatigue, that’s going to be difficult to manage, pain and things that at the end of the day, you will probably see them as negative, but, if you can control that and understand that you can manage this.

A big thing for me was, as I experimented, I realised, some of this is in my control, it’s not completely out of my control. Certain things I eat, if I don’t sleep enough, if I I’m not active enough, if I put myself in a situation where I am cold for too long I will feel it more.

Be a student of your own condition, instead of letting it be the monkey on your back, or being that person who uses the condition as an excuse that you can’t do things. It’s almost as much a mindset as it is physically, if not more, to kind of realise that, you will have difficult days, you will have better days, parts of it is in your control parts of it are not. You can’t resent the parts you can’t control because that is the kind of life we live, it is up and down. if you take that kind of ownership and say I’m going to keep growing as a person because really, I kind of see it as my mind has expanded and I’m more powerful in my head now than I used to be, even if I’m not as powerful physically. Again, it’s like trying to find ways to satisfy a need that you have that you can’t satisfy directly.

I suggest seeing others with chronic illness, socially, if you can, they can understand your journey better, because people close to you, while all well-intentioned, struggle to understand the pain you are going through, or how the impact of your joints moving is. Sometimes, if you have very visible physical joint problems people can be more compassionate, but if it’s not visible it’s sometimes hard to explain it.

Don’t neglect yourself socially, really try to strengthen the areas you can and make sure you are fulfilling your needs to live a naturalised life.

I am very much a fan of people researching their condition and integrating their own thoughts with their consultants. I feel I have gone in and the medical staff are receptive to me, I don’t just go in there and say what can you do for me, I go in and say I’ve looked at this what do you think about this, this is a detailed report of what is going on at the moment. I think you get a lot out of it if you are willing to try yourself to make a difference and work with them. It is difficult to do, especially in the aftermath of what you feel you have lost. Become a student of your condition.

In a strange way, chronic disease has helped me grow as a person, I’ve spoken to people who have said I have almost been so resilient I have bounced back further than where I was at the start. My mindset has developed now, I’m able to conquer things I wasn’t able to conquer before. I feel gratitude now, because of the changing elements of the disease its unstable which gives you that uncertainty in your life, in a way you need a bit of uncertainty in your life to grow, so,  in some ways it’s a strange blessing in disguise.

Thank you for reading my interview, and I hope there was some value in there for you. Please contact me if you wish to discuss how I can help you to overcome your challenges through my bespoke coaching programme!

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