Sunday, 2 January 2011

Fighting Back

Firstly, I hope you have all had a great start to the New Year. I have not been so fortunate. It seems my body decided I had to choose between having either a good Christmas or New Year and wouldn’t allow me both. I have come down with terrible flu (not a simple cold) over new year but still enjoyed myself and made a swift trip to Wales (although shorter than planned). My body did make the right choice as I still got to have the great Christmas with my loved ones I really wanted.
 Secondly, some of you may have seen the recent article in the Daily Mail about me and after some frankly ridiculous comments were made online in response to the article I feel it’s only right I respond and fight my corner. Once again, I did the article for one purpose only, to make people aware that arthritis is present among young people and it can be triggered by something as simple as having a viral illness. Several people have made comments about what was written and suggested that contracting RA because of a cold is ridiculous... not true. Obviously the journalist picked up on and emphasised the fact my arthritis started after having what at first seemed like a bad cold and, as we as a society like to read about the extreme, this point formed the headline.
 I was generally happy with the story, although not entirely factually correct as it stated I was 23 when diagnosed (I was 22) however, it did portray what was a very, very difficult period in my relationship in a different light to what I experienced. I only say this as I know that many of you have or will go through difficulties in your relationship because of your disease. Both my boyfriend and I went through a horrendous time and our relationship broke down as a result. The article only highlights the good parts of our journey, that now we have resolved our issues and moved forward but it wasn’t entirely correct to suggest that we were together and happy through it all. My family and friends were the people that supported me through my darkest days. I now have the support from the person I love but this has only come through soul searching on both our parts about what is really important.
 Also, some idiot made a comment about how I could possibly be a ‘high flying executive’ at such a young age.... where do I start with this? Well, firstly, does it actually matter? Has he not read the story and had anything else to comment on? The main points were there idiot man. Who reads a story about a young person suffering and thinks the most important response to make is on how something so pathetic is worded? READ the story idiot man. The point the journalist was making, and those who know I well will agree, is that I was a success story at such a young age. A graduate fresh out of uni, working hard to achieve my dream job, which I was very good at, and on track to get a promotion. Some others have suggested that I would be branded a benefit scrounger... is that just another way of saying that YOU think I am a benefit scrounger? I am fed up of defending myself on this point. I have been SERIOUSLY ill for a very long time and only now recovering from various problems my disease has caused. Recovery doesn’t happen overnight and until I am ready and fully capable of committing myself to an employer I will continue to be on benefits. I have paid my taxes and I genuinely am ill so why should I be made to feel guilty? Do you think I want to be in this position? I desperately want a normal life, to be able to work and earn my own money, buy the things I like and not have to worry that I may never afford my own home etc.
 So this has been a bit of a rant and I apologise but I feel the need to fight back on a few things. The last point I will make is that I have noticed a lot of competition in things people have said over who is worse off than whom. It’s not a competition to decide who is the most ill, we all have our own thresholds of pain and suffering and should just support each other, not complain that ‘whatever you have I have it worse’.
 I hope those of you who have been offended by comments made about my story, or comments perhaps made towards you, will find some peace in this blog. Feel free to vent yourselves. Happy New Year... here’s to getting your facts right in 2011.


  1. I haven't read the article as I'm not in the UK but I am absolutely horrified that people would respond in this way! Honestly what is wrong with people? Since leaving the UK, I have noticed how complaining and whinging we are as a race, never happy unless we are trying to put someone down and it seems as though this is what has happened to you. Outrageous. I do think that there are some real weirdos out there too. I mean, who has the time to make such ridiculous comments. Only a real loser I'm afraid. Keep going you are an inspiration.

  2. we all have our own story of when RA hijacked our bodies. Mine i belive was through a severe mental trauma. I personally don't remember having any colds or viral infections.What i do remember is waking up one morning only to find i couldn't actually get out of bed. My feet, ankles, knees, hands & hips were all swollen, red hot & extremly painful. I couldn't even get myself to the bathroom. I somehow managed to get myself to work only to be laughed at & asked why are you walking funny, have you had an accident! I made an appointment to see my doctor, i had a blood test & was given paracetamol & naproxen for the pain & swelling. The Doctor also suggested i keep a check on my left foot as it was very purple on the sole. after a few weeks my blood test came back with low RA so i was kept on the meds i'd been given previously. 2 weeks later i became very poorly, swelling was still there and i was finding it very hard to breath. My eldest daughter insisted she take me to my GP immediately. once there i was rushed into hospital, i had an oxygen mask put on my face & morphine injected into my arm. The hospital doctor asked me a few questions as they do, i pulled the blanket from off my feet to ask if they had anything to do with it, she looked in disbelief. next thing i was having an injection in my lower tummy. I had a blood clot on my lung, which had come from my swollen foot. i had to have a week of these injections, but i was also put in contact with a rheumy nurse. She is brilliant, i was on prednisolne for 4 months, weaned off them for 14 feb 2009 & took myself to Iceland to see the northern lights for a treat. (no show from the lights though). My RA flared up again once the prednis had worn off, i was then given methotrexate, planqil, etc which i have been on for 2 years now. I am still working, but as they moved our office i have to commute by train. not good! All of us that have this condition know how painfull & debilitating it is but thats where the similarity ends. We are all different & have different ways of dealing with our RA. I know only to well that it could be fatal as dramtic as that sounds.

  3. Hi. Please don't be put off by the nasty comments from the Daily Mail site. I first heard about you and your blog through Company magazine and it made me so relieved to know that I am not alone. I have suffered from RA from as long as I can remember (I am now the same age as you). 20 years of my life and it's ambitions have been supressed by JIA. That's 20 years of explaining that RA affects kids too, 20 years of convincing people that I'm not making it up and 20 years of assuring pensioners that I am not fraudulently using my Gran's blue badge.
    Your Company article made me smile and warmed me inside. If the Daily Mail article did that for just one person, then you've succeeded at your aim and should feel proud of yourself.

  4. Well done on your efforts to raise awareness of the fact that RA and other forms of arthritis aren't just 'old people' conditions. Appearing in the press is rarely the fun that people who want to be 'celebrities' think. But if you're going to do mainstream - especially tabloid - media - then really, just don't read the comments (most of the people posting them aren't worthy of your time anyway!). It sounds like you were represented roughly accurately but even then people will paste their own prejudices over the top of what they *think* they've read. My husband and I appeared in a DM article where nothing we were quoted as saying bore any relation to anything we actually said, or to the circumstances of our lives. We weren't that bothered - I think partly because the people in the article were so 'unlike' us that the criticisms we got didn't seem to actually relate to us at all - but it was still unpleasant to see total strangers saying we should kill ourselves etc etc. But that's Daily Mail readers for you!

  5. Hi my name is Cath, I was flicking through a magazine in work the other day and saw your article, I was diagnosed with RA at the age of 20 i will be 24 in June, and the last 4 years have been a roller-coaster. before i was diagnosed i did not know what rheumatoid arthritis was, I had never heard of it. I was in my second year of studying my degree and i can clearly remember, gradually, every morning my body would be in so much pain i was so stiff to get out of bed, in the end my partner or my parents had to wash and dress me. i was finally diagnosed and had many injections into my joints. I was relieved to finally find out what was wrong with me. I have tried various medications, and i am now on two injections a week.

    Having Ra has changed me as a person so much, it sounds bizarre but i realise how lucky i am compared to people who suffer with worse illnesses, and has opened my mind.

    Although I am really feeling the strain of trying to live a 'normal' lifestyle with RA. I have finished my degree and now working full time, which i am coping with but i get constant flare ups especially in my wrists, where i have now lost alot of movement and strength, i am constantly exhausted, and i am slightly annoyed with myself as my confidence has gone. People do not understand why i cannot lift something that should be light but weighs a ton for me, and people do not understand. Well enough of my moaning, my point is that finding your blog has been so relieving as i have been looking for young people who also suffer with RA.

    It would be great to be able to speak to others my age with RA to get some advice on how you cope with things and also any good exercises for my wrists :)

    Kerrie I think it is great you are doing so many inspiring things for people with RA and will definitely keep checking your blog to get involved x

  6. hi have read your blog after flicking through company mag and feel the need the write something my husband has suffered this condition for 5years now and i know 1st hand how hard it is to lead a normal life i sympathise fully with you because when like you say you you may be having a "good" day people make you feel you should be out working but they do not see the big picture like having to go back to bed because of fatigue or not being able to open a bottle of milk or even put the kettle on.I wish you well with your treatment and hope your flare ups are mild and infrequent regards from someone who understands

  7. Thank you, Rheumagirl, for your insightful blog. It must be quite a comfort for young men and women like you to have a place to go for company in this less than pleasant reality. I applaud your determination to spread awareness. This, above all, is what we need to get funding, research and knowledge to combat RA.

    I noticed many of your readers are like you, in their 20's and many of them struggle with a lack of common understanding of their disease, leading to a lack of courtesy and respect in the workplace and community. As a 47-yr old, I wanted to share some more "mature" insights on dealing with co-workers. I am a teacher and my health situation was beginning to make people wonder...why can't she pitch in when it comes to physical labor? Why doesn't she go on field trips? Why does she get a key for the elevator? Is she lazy? Is she sick? Does she think she's better than the rest of us? Finally the day came where I realized it was time to liberate myself from their silent accusations. My closest friend knew about my worsening RA, but many others in the building had no idea. Did I feel like explaining it at the copy machine to every teacher and secretary who came by? No, I decided it was time to make an announcement. I wrote a "letter" or flyer telling them about RA and my treatment, how unpredictable each day is and a few other additions. I copied it and put it in each of their mailboxes. (You could do the same via email.) I cannot tell you how much better things are for me now that the questions are over and there is only support and friendship. Now at the copy machine, my co-workers just ask how I'm feeling today. Try it.