Emotional Support

In my case I think that my emotional state contributed to the onset of RA.  It is, I feel one of many factors, including a genetic weakness, poor diet with too many acid-producing foods that meant that for me RA is just a symptom of the ‘straw that broke the camel’s back’.

The emotional support I received when diagnosed, has helped me face my fears, recognise my limitations – and admit them – and given me the strength and moral support to try and do something to help myself.  I hope that with this website I can in some way provide that for you.

There are many hundreds of people, young-ish women just like myself who are diagnosed with RA.  The biggest percentage of sufferers are over 40, with three times as many women as men are likely to suffer.  I didn’t know that before…

My best emotional support was the nurse at my school – like me she was just over 40, facing a stressful life and newly diagnosed with RA.  She was in fact 6 months down the line ahead of me.  Talking to her made me feel better.  She helped me to realise that the hot flushes, which at first I had thought of as the onset of the menopause, and the overwhelming fatigue and being an emotional wreck are ALL part of the disease.  It wasn’t my fault – I hadn’t asked for it.  I had done nothing to deserve it.

She also helped me understand, in the depths of my despair, some of the  aspects of the science behind RA.  This has helped me considerably when investigating possible treatments.  She, like me, was taking Sulphasalazine and had good days and bad days, seemingly without rhyme or reason.

She gave me some publications from ARC – Arthritis Research Campaign. www.arc.org.uk and nras – National rheumatoid Arthritis Society www.rheumatoid.org.uk, which has a free phone help line. 0800 298 7650. RA sufferers run it and they understand the difficulties facing us. It has helped me come to face my disability by learning from them.

I have just found a website with a forum – an online chat room for RA sufferers on www.arthritscare.org.uk.  They sound quite a chirpy bunch but haven’t posted any message yet.  There is also a very good forum called www.RheumorWeb.com.  They are very welcoming and friendly and have been a great help for me.  Also do not worry if you have not joined a chat forum before as there are plenty of members who will show you the ropes and help you to settle in.     

I tried to apply for the UK Disability Living Allowance when we moved and didn’t hear anything for a long time and so have just done it all over again online. There is information on www.direct.gov.uk and even more help on www.benefitsandwork.co.uk. Worryingly it seems that fewer and fewer people are able to claim this benefit, even though they have to suffer the serious consequences of a debilitating disease they never applied to receive.

My biggest emotional support however is my family and friends.  Most people, including the students, at my school realise that something is wrong with me and are supportive and understanding when I explain exactly what has happened to me.  Of course, the biggest hurdle you have to overcome is the feeling that people are saying – ‘She is putting it on’ or just not realising that you are not lying and that you have a genuine reason for being off work.

Of course, it helps me that my mother has been through all this too and can relate to my feelings of depression.  My children help me emotionally and by doing little tasks that are now too difficult for me – like carrying the shopping, or washing.  My husband helps me by taking on the cooking and helping me to realise that he still loves me and finds me attractive despite my inadequacies.  In spite of all this it is hard to be positive and unemotional, when the littlest thing is very hard to do. 

Please email  me or post on our forum  if there are emotional issues related to RA that you would like to share.

Article by Rose Parker © rheumor 2007