it just hit me like a bus, sat in my room trying to finish some work but the pain just got to much..i tell my mum and ask for some medicine and she brushes it off like its no big deal. i think she forgets what im actually dealing with. no-one understands, anyone who isn't going through it themselves just does not get it...i've given up trying to explain it to my friends because all i get is sympathy which i really dont want it makes me feel like im different.
everything just made me more upset...after my steroids i've already gained weight and im finding this so difficult..i worry enough about my weight as it is and now i gain weight without even eating badly...this isn't fair. im so tired of getting annoyed at seeing all my friends going out all the time getting boyfriends and having fun when the whole time i just feel like a outsider. honestly im scared to get a boyfriend how would i tell him..would he just think im a freak?..i dont even want to get into that situation. the stress of getting through all my exams is one thing and add all the stress that comes with RA on top..it just pushes me over the edge sometimes. i can't handle it all. i feel like im trapped in a world all by myself..i could be in a room full of people and still feel alone, i sometimes think the social and emotional side effects of RA are worse than the pain..i live with the pain every day it doesn't change..the world does. i feel like i just need to break out and scream and then it will all go back to normal..but what is normal?...my normal is very different to my friends normal.
growing up with RA is so different than a normal upbringing, i feel like im so much more mature than all my friends..dealing with all this forces you to grow up faster..there so many more decisions that you need to make..you need to think about your future and you need to be able to communicate with your doctors like a adult.
blowing candles out on a cake, my friends would wish for a new pair of shoes..i'd with RA would go away. everyday i contemplate how my life will pan out, will i have kids will i get married? will i be able to sustain a normal job these are the un answered questions that roam my mind.
that night i let my emotions that had been building up take over my body until i fell asleep but as everyday i woke up and put that smile on my face and no body would know that anything was wrong.
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soph_holmes
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Oh honey, I feel for you I really do even though I'm much older.... Hang in there and you will get good support on here from people who really do understand and there are young ones who will be able to relate to you and assist you on YOUR journey.
Good luck with your exams, you seem to be a focused girl and that will count for loads.
o bless u hun, nothing i say will help but they will find a cure and then u have a lot of your life in front of u, it helps to share though, take care sweetheart xx
I know just how you feel. Not being able to tell people what it feels like to have continuous pain and pain that is so debilitating and then to get them to understand. To understand without thinking that you are putting it on! However, I have had RA for forty years and been through several orthopaedic operations. Just recently I have had an elbow replacement. All of these procedures do help considerably. I also have Anti-TNF infusions every six weeks at the hospital, which are really marvelous and keep me going a lot of the time without too much pain! I know you may be thinking when is someone going to help me and take away this horrible situation and is there any future for me with this RA. I can only say to you there is! You will have to take the lead and seek that help and really push at times for something to be done, but there is help available and relief to help with the pain. Keep your pecker up and I wish you the very best of luck for the future. Brian
Oh I'm so sorry you have to cope with all this Soph. All I an say is that I'm fifty and feel much the same way about RA as you do in terms of others around me and putting on a mask. I know the uncertainty of living with RA day to day is what gets to me most. And no one who doesn't have chronic pain to contend with can really understand that.
When I was your age I was covered in horrible eczema so I can relate a bit to what you are going through. I was often on steroids and my hair kept falling out with alopecia. I felt I would never have a relationship or get married or have kids somehow. But as things panned out I've done all three and now I thank my lucky stars that at least the eczema has gone away even if I now have RA. At least RA doesn't leave unsightly patches all over your face and if your photo is anything to go by you look absolutely lovely - even if steroids have plumped you out a bit as you say I'm sure you're still lovely and maturity you have gained from RA will pay off in many other ways.
When your exams are all over the stress will ease and your RA will probably quieten back down because stress is terrible for it as I'm sure you know. Perhaps you will meet someone who has had to mature equally fast for similar reasons even? Don't despair - we are all here for you too. Tilda xx
I am new to this site..and onli recently diagnosed...(been suffering for years tho)..... But im a mum , and reading what you are saying about how you are feeling tugs at my heart.....im no expert on our horrible disease so im sorry all i can offer is a ((((hug))))) ....but there are plenty of wonderful and caring and also knowledgable ppl on here to guide and support you.... Just wondering if your mum is in posession of all the facts / leaflets etc available ? So she can support you to the best of her ability... Thinking of you lovey...lisa x x
This is an excellent idea. My ra came on very suddenly a year ago so I am still coming to terms with new drugs, new symptoms etc and like most of us on here find it difficult to explain it all to my friends and family. If more of our friends and family could read just some of the blogs it might help them to understand how confusing and distressing ra can b.
To tackle this when ur so young seams so horrific. My heart truly goes out to you. But ur drive and determination is admirable. Hope u find other younger members on here that can help suport and comfort you.
So sorry to hear of your struggles. Do the exam people know you have RA? You could be given extra time, breaks, perhaps do them somewhere you could get up and stretch. I hope they go well as theyre important and that you can get proper support not just sympathy
Awwe poor you.....Exams are sooo stressful ..(I have twin 17yr old who are doing A levels atm!!)....It can get to you when your fighting fit let alone when your dealing with pain etc!...
But you sound like a bright girl.....Hang in there..... tomorrows another day!!....
Good Luck.......
Wendy x
Hi Sophie, sorry to hear that you are struggling, more so with you being young and your whole life ahead of you. I do agree with Cathie's comment speak to the lecturers about your exams and that you are unable to write for long, they can arrange for a person to type up your answers when you sit in a separate room, speaking the answers out to them. You can get help but you have to request that help.
I was hoping that little Emma would respond as she appears to be about the same age as you but maybe she has not seen your message yet, if not why don't you private message her and see how she copes with it all. She has blogged in the last couple of days as it's her birthday this week.
Sorry but I am 'old lady' compared to you, (will be 60 this year), although I can commiserate on pain etc but living with it whilst young is no comparison. I too have a skin condition called Psoriasis all through my life until I had the meds for PsA. I can understand from that point of view as my hands were covered both on the top and palms along with the rest of my body, I thought that nobody would want me to cook for them let alone want to have children with me. But I found a lovely man, who has been through thick and thin with me and we are still together, 36 years later. Someone who is lovely and caring is out there and waiting for the right time for you, and you will have the life that you want. Just concentrate on now and the coming days with your exams and the rest will follow in it's own time.
Keep letting us know how you are getting on, most of all, enjoy your life to the best you can with your RA. We are here for you when you need us for good or bad. Take care. xxx
What a bummer Sophie, it really isn't right that young people have to suffer this insidious disease. Like everyone else has said to you you will get passed this. Your exams will be over soon and then you can concentrate on yourself. You haven't said what meds you are on, please let us know so we can offer some advise for you.
I can only just imagine what a devastating thing it is for you at your age to watch all your pals out enjoying themselves but you know you will have your times when you will be able to do all that too. Your weight, boyfriends/girlfriends, dating they are the sort of things we all got stressed about and we know how difficult all those things can be without being in pain all the time. I guarantee you that you will enjoy being young at times and you will be able to do things with your friends just maybe not as often as them
. You said this disease has made you grow up far to soon so you are going to have to rely on the maturity to keep you going in the hard times. Keep on this site there is so much informed information on here. We have all been where you are at some point, almost ready to give up...... But we don't we keep putting one foot in front of the other until the next 'good' time comes along and believe me they do and you will appreciate them all the more. Please keep in touch, we are all thinking of you and you have support here from all your fello sufferers. All the best darlin. XXX
Poor you Sophie .... no matter what age we are most people remember being young & can relate to what you are saying. It is not fair & my heart goes out to you.
Sophie, there are people out there with big hearts & big minds who will understand what you are going through & some of them will be boys as well as girls your age. The (only?) advantage of age is knowing how incredible people really are ...... you've got exams coming up so yes, of course, one step at a time. But don't give up on having fun with wonderful friends who absolutely get it .... you just have to believe that they exist and you will find them.
I wonder if your Mum is all too aware of what you are going through & keeps her feelings under wraps? It's difficult for parents to know the best approach to take. Does she go to Rheumy appointments with you? Just doing that can open peoples' eyes - it worked with my husband anyway.
Don't bottle stuff up but don't forget that you do have a future, you most definitely do.
Hi Sophie, My heart goes out to you as with everyone who has already replied to you. Loads of good ideas, this group will always give you a listening ear with pearls of wisdom. Please keep sharing so we can walk along side you. I'm a mum too so would love to sit with a cuppa with you & just listen. I do feel for your mum too. Love Alison x
I really do admire you Sophie, I can't begin to imagine what it must be like for you, I'm a lot older and know how hard it has been for me to accept and deal with this condition. But again like everyone says hang on in there, things will get better. You are amongst some of the most amazing and lovely people here on this site, I have only been a member for a month or so and these wonderful friends here have already helped me so much.
So please keep us updated on your progress, and remember you are not alone, we are all here to listen and help if we can, good luck with your exams and your future. By the way I really do think your amazing, the way you are coping with this and for being such a brave young lady.
Hi Sophie, so sorry you are having such a hard time at the moment.Just wondered whether there was a local support group in your area for those with RA. Maybe you and yr mum could go along together. You could get support and she could get a better understanding. Maybe she is worried about you and her way of dealing with it is to try and keep everything normal(even though it isn't). Hope you can get some support. Definitely would spk to yr school/college. I work in a college supporting students with additional needs and have met many students with JIA. We can arrange all sorts of help for them. Very best of luck
It sounds like you're going through a pretty rough time. I'm really sorry to hear that you are struggling at the moment, but lovely to see the nice, supportive comments you've had.
I believe you have juvenile arthritis, and I think I may have made this suggestion before, but not sure if you have got in contact with Arthritis Care? They have a section specifically for young people with arthritis, and have some goodinformation on coping with exams etc. They also have a helpline and a forum, where you might be able to get in touch with some other people your age who understand what you're going through and may be in a similar situation themselves:
We are hoping to create a website alongside our own that deals with juvenile arthritis later this year, but until this is up and running I hope that you can get some support on here and from Arthritis Care.
Hi Soph, Sounds like you are having a real bad time at the moment, just try to take one day at a time and concentrate on your exams. Once you get through your exams I'm sure the Ra will settle down a bit, stress is one thing that can set it off. Maybe your mum is trying to make light of it because she finds it hard to come to terms herself with the fact that you have it.
Aw Soph. take heart and don't even think so far in advance, I'm sure one day you will find a caring boyfriend who will love and support you for who you are. You sound such a lovely person and very intelligent you should have no bother in getting the things in life that you wish for.
Owww sweets, reading your thoughts put a lump into my throat. We are here and we completely understand.
I know what you mean. I don't bother talking to my mum about it anymore because like you say they just don't get it. My dad has a better understanding as he has ra too but he is from a different generation and has a different way of thinking. I feel alone with the ra too and nobody quite realises the pain I am in - even my husband - I always put a brave face on it.
Life is extremely hard for you at the moment what with your exams. It makes me want to curse knowing there are youngsters, such as yourself going through ra. You probably feel you have to work twice as hard because of your health getting in the way of your plans. I completely understand. My cousin has crohns and she has had it since she was 9 years old. She has had time off school because of her health and even retook a year. She is now 21 and now a qualified nurse! I take my hat off to her because she is very exceptional and an inspiration. This could be YOU in a few years time - an inspiration to others.
She is also older than her years. You are certainly further ahead than your friends and at the end of the day after school, things change and people/friends move on. You've also had to talk the talk with docs, which is hard enough even when were an adult. You are very intellectual and will go very far. I know... it is hard and yes you have many obstacles but you seem to be a fighter and very switched on sweets.
I agree that the mental side of ra is worse. Sometimes I think we need to take a moment and take some time out. When I am low with it I read, put some load music on and sing badly or watch my favourite film. I think it helps my brain digest the emotions to ra.
We are here and hope you do not feel so alone now. Claire x
poor sophie you are so brave, it is horrid to be in pain at any age, im in bad pain but I am probably twice your age, you and little em are so brave, you will find a caring boy friend I JUST found one well last july X
Hi Sophie, You sound such a lovely mature young lady and any boy would be lucky to have you as a girlfriend. Things will get better for you, it must have been stressful having exams etc to deal with without all the pain associated with arthritis but now the better weather should be with us soon and exams over you may start to feel better but if not just you get in touch with the rheumy nurse and get her to help you. Look after yourself sweetheart and things will get better. xx
Hi soph. My RA started in my teens, finally diagnosed at 21 while I was at uni, it has been tough, tougher than it is for everyone else without it, but it'll make you stronger! My RA has been quite severe . I'm old now ! (40) I teach in a secondary school and have a girl in my form with RA. The treatments are so much better now than 20 yrs ago so there is real hope in that area. And as for boyfriends there will defo be someone for u, RA shouldn't make a difference - apart from them havin to do their fair share of the housework ! I have two little children and a great husband who I told about my RA straight away - before he spotted my v attractive wonky gnarly hands !! RA is an absolute s@&t but don't let it beat you!
Hi Soph so sorry your having to deal with this rotten disease . Please don't suffer alone we are all here to help and guide you. Good luck with your exams. Best foot forward don't let this disease beat you lovely xxx
hope all these comments have helped. You must already be so much stronger and wiser than your peers. Coping with this at an early age will set you apart but will make you so special. Anybody who is not prepared to understand is probably not worth considering as a boyfriend / friend.
I agree you would benefit from some back-up at your appointments and the support of your GP to ensure you get the best treatment. You need to be listened to for professionals to understand what you are going through.
When your exams are over you can take a deep breath and find that strength & determination to be the great person you are inside. You'll be able to say "hey world, this is me. I have a health issue but it won't hold me back!"
Good luck & don't forget to enjoy the sun when it shines. It will shine on you when you can get out from behind this cloud x
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RA for 13 Years
