Hi i’ve been feeling very down and lonely due to my condition and was wondering if anyone had any tips to being more positive. I feel like my friends don’t understand my condition and i hate looking like a ‘downer’ by declining plans and not being well enough to go out. However i don’t want to burden them talking about my arthritis. It makes me feel really lonely at times, if i’m not at work i’m at the hospital.
I’m 19 and should be going out with my friends having fun, but i cannot hack nights out drinking alcohol. I also have been having trouble with my confidence and self esteem, i feel like i’ll never get a good job with my condition or i’ll never be able to go to uni because i’m too fatigued or in pain. It has really knocked my confidence when applying for something other than retail. There’s so much stuff i want to do but haven’t been feeling well enough to do it.
I work long hours in retail but i do it for the money as i have stuff to pay for, I rarely ever feel well enough for work but i push myself to go otherwise i’ll have no money for the month. December is coming up and i’ve got way too many shifts yet i’m too nervous and shy to tell my manager I cannot hack the long hours as he’s already done the rota and it would mess everything up. I want to be able to work and I want to be able to see my friends but it’s really been getting me down and I was wondering if anyone had any tips for my confidence or how they handle work around busy christmas periods. I feel like my mental health has gone down hill and i’m unsure what to do about it.
I’m hoping to try the injection of methotrexate next week as I have been struggling with the tablet form. Sorry for the long rant, i just feel very alone in real life and as if no one understands me being young having arthritis, they underestimate how lonely and difficult it can be.
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oliviagodfreyxx
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It's such a shame you've got arthritis at your age , hopefully your medication will kick in and you'll feel better. Please talk to you doctor or your rheumatologist about the way you are feeling. Do talk to your friends about your feelings and talk to work about the hours you're being asked to do and try to get less hours. It's hard for people to understand as they cant see what's going on with your body PLEASE TALK to someone who get you help with your feelings. Hugs x
thankyou i really appreciate it, i think i will ask for less hours so maybe then i have time to focus on myself and see my friends a little more. it’s hard seeing them succeed in life when i have a silly retail job. thankyou for your help x
It's not a silly job and you must be good at it or they wouldn't give you extra hours but I think you need to think of yourself and your health when I diagnosed I had to go to a cognitive behavioral therapist it's such a lot to take in. Be good to yourself please xx
So young to be dealing with this.... Life is hard with RD but I think harder at your age. There is no quick solution I think you need help speak to your GP or your clinic nurse. Lots of us suffer depression maybe you have this... not saying you have. Your friends are young and understanding this disease will be harder for them(they haven’t experienced life enough yet) and some older people find it hard to understand.you feel overwhelmed at the moment and why shouldn’t you. When your medication starts to work you will feel stronger but please see someone so you can get help xx
I am so sorry to hear that you are feeling like this. Your priority must be to get the right treatment to help you feel able to tackle other difficulties.
Long hours in a shop must contribute to your pain and tiredness.. but I imagine that if you had an office job you might cope better. Don’t give up hope but do ask for help. NRAS might be a good place to start. Sit your best friends down and explain how you feel and what the issues are for you in going out with them. Might they come over and have a night in with you once in a while? People can be amazing if you let them know what you need. Stay positive, things will improve xx
my mum says i’d be better with an office job, but i haven’t been applying to many places because i don’t feel ‘good enough’. i will try and explain to my friends as best as i can, thankyou for your help it means a lot xx
Please don’t feel down or alone. There are many of us suffering with this disease and we all have these times and we all understand how you feel. Believe me i’ve Been to some pretty low places in the last year.
But back to you... you must learn how to look after yourself and must not torture yourself that you’re missing out if you’re not well enough to go somewhere. That includes work. Your health and mental state have to come first. So pluck up the courage to talk to your manager - you will feel so much better when you do and you put yourself as a priority. Putting yourself first will boost your confidence!
You’re young and you have your whole life ahead of you so just take it slow and do what you can when you can. Remember - you are important and you come first. Good luck and come back and share how things are going!
thankyou very much i appreciate it a lot. i’m hoping less hours will give me more time to concentrate on myself and feeling better. thankyou again & i will keep you updated xx
I really feel for you and understand your situation. RD can be so overwhelming especially in the early stages. I found that I had a few dear friends who understood and worked around my needs.
Give it a go and share with yr friends yr struggles. Give them a chance to help and understand. It only takes one friend who is a listening ear to lighten your load.
I have a close friend who has fibro and we have a good old natter about our aches and pains and then we move onto other things.
It's wonderful that you are working....It must be very difficult. Definitely talk to your manager.
Be really kind to yourself right now and do some things that give you joy.
Have a little party at yr place maybe but keep it short. A bring and share.
Stay on this site. You will find a lot of comfort here.
thankyou rosie i appreciate it a lot, this site has helped me lots because for once i feel like people are there for me !! i will definitely talk to my manager thankyou xx
I completely understand your pain , frustration and dilemma . I was 17 when I was diagnosed and that was 18 years ago .
First things first - meth injection is much better than the tablet form . It worked for most people and their standard of living improved significantly (me included).
Taking it on a Friday night after a starchy meal and good night sleep , I have most of my weekend pain free . You can try and see if it works for you.
You will need to talk to your rheumy- and come up with a plan to deal with arthritis . Splints , different medication , therapy for trauma , any change in habits etc . Taking care of oneself emotionally is a critical thing and therapy/ even having someone whom you can vent to , is of great help .
Job - tell your manager . I was in your position until last year . My pride and ego never allowed to take help or ask for support - we are not weak because we ask for help . It’s the trait of a strong person .
Doesn’t matter if the rota is out - your health is very important.
Regarding friends , you will probably have to sit them down and explain how you feel physically and emotionally and that you will need their support . Try non alcoholic gin if you have to drink and find an activity that you can enjoy together . I lost more friends than I can count and it was such a pain back then . Now , with this new found wisdom , I’d say “good riddance”.
Dreams - it’s ok to be worried and scared of future . You will achieve anything that you can set your mind to . You need to relax a bit and please don’t stress . Stress makes RA worse . It will get better soon . I promise . Hugs !
thankyou very much siri, i appreciate it a lot. i think i will message my manager about the rota as maybe less hours will give me time to focus on myself and see my friends etc. thankyou again x
So sad that you are suffering RD at such a young age. It must be incredibly difficult.
Do you have a few very close friends you can talk to? I found it helps to educate those who really care about your illness., sometimes they can be in your corner when you are struggling.
Once you have the disease under control you will be able to resume 'normal' life, sadly this takes time because different things work for people, we are individuals and react differently.
I guess, at my age and after 20 years of living with RD, I have found that counting my blessings i.e. listing all the good things about my life, and refusing to focus on the negatives helps. It gets easier with practice. Also being pro-active in your disease management is a positive step - healthy diet and regular exercise, a long walk in the fresh air, even with pain - I have limped and hobbled but find it essential to get out there. Yes, there are days when it is not possible but I try to force myself to do something . The healthy diet is also essential for me along with a belief that if I feed my body good nutrition and treat it well, it will respond well... Maybe it works, there is evidence that it helps, maybe it is in the mind, either way. I think it is the belief that you are doing good things to help yourself that keeps your mind healthy too.
Sorry that became a bit of a rant.... please disregard as you choose.
thankyou very much. my diet isn’t really healthy so maybe changing it up a little will help. and i have a small friendship group i just feel annoying bringing it up. as they don’t understand much. i have a friend who has EDs and it’s nice to talk to someone where we have things in common, so maybe talking to them would help more. x
You could perhaps ask them if they’d like to understand a bit more about what you’re having to deal with. When it’s understood it’s easier to mention when you’re having a tough time.
It’s really good to focus on positive things you can do to help yourself.
So young to be going through this and it sounds like you may have recently been diagnosed? I may be wrong.
It’s so difficult when you’re unable to go out as you feel like you’re letting your friends down and they probably won’t feel like you are. The trouble with that though, is it’s in your head and however many times they will say it’s ok, you are still beating yourself up and making it worse for you. It becomes an ever decreasing circle and you’re feeling isolated.
The first step is to deal with that. CBT would work really well. Ask your GP in the first instance, but there may be a long waiting list. Finding someone privately may be better and quicker. Most will do a free consultation so you’ll be able to see if they’re the right person for you. This should help the way you think about your situation and will help you to cope and think more positively about your current situation and the future.
You can do that this morning and get the ball rolling 😀
Next, work. You need to speak to your manager. If you don’t, you will feel worse and then possibly go off sick. No help to you at all and they won’t be cross. If they are, they’re idiots 😂
You’re changing to injections, so that’s one bit ticked off.
If you can do the two things I’ve suggested today, you will start to feel better as you will have made a start and a decision. That alone should make you feel a bit more positive.
thankyou for your reply, i was diagnosed in 2017 but only started methotrexate this february, however it’s only started making me feel really down these past few months because of how sick the methotrexate has been making me (8 tablets weekly) i will definitely try what you have suggested thankyou very much. and it’s okay, my mums my biggest supporter so it’s nice to have more 😂💓
Could you arrange to meet your friends at lunchtime at the weekend and then when your ready to go home you can and you will have met your friends and if you sit them all down and tell them you would be happy to meet them then as it is better for you. Also invite them round to your house before they go out so you have some input in the evening. I am sure some of them will be happy to see you even if it is just for a hour before they go out. You could invite them to put they make up on at your house. That will help boost your confidence. My ra/fibre and their friends have sapped my confidence and I am an old bird darling, it still grieves me not to be able to go out in the evenings. xxxx
I wish there were more “old birds” like you Sylvi....you always make the best of a rotten situation.I’m sure reading your replies jolts a lot of people out of their down times.....I nearly always have a smile when I read your posts!
that’s a good idea, i never thought about them coming to mine before they go out. atleast i would have seen them for a while even if it’s not for long. hopefully the injection will make me feel a little better. thankyou very much for your advice i appreciate it a lot xx
Your welcome darling. You could have a bottle of wine ready or whatever they drink chilly in the fridge and you can have one glass so you can feel part of the group.xxxx
I'm sorry to hear you have RD at such a young age and all the above advise seems to say such good and useful things. It's not easy trying to get friends to understand at any age, but you will find those who care will stick around. I call them fair weather friends as they are the ones who will help you through come rain or shine. As you are working lots of hours how about suggesting to friends a girlie night in once in a while, some non alcoholic punch, some foot spa, face packs, make up and pampering kind of thing. Nothing expensive to add to the pressure and stress of your budget, but to lift your spirit and get together with your friends. Again meeting up at a lunchtime or perhaps all cooking something inexpensive together all doing something to prepare and contribute to a meal and good chat together. This disease while difficult to cope with alongside all the day to day trials and tribulations shouldn't define us, a true friend will always accept you for who you are and weather they fully understand or not what you are going through they will be there for you. I too am going through a very difficult and distressing period of my life right now, but I hold onto hope that things will work out and whilst it might feel like there is a mountain to climb, and there will be days we feel we can't or will we ever get there, stay strong and focused and we will get there. Take care x
thankyou very much i appreciate it a lot, i hope you are okay also, it’s very difficult at times but i’m hoping that it gets better soon. thankyou for your advice i really appreciate it x
I've had RD since I was 37 and my mum had it at 28 and I have seen how it can impact upon your life. I'm nearly 55 now so I hope I didn't come across as a 'fossil' with any of my ideas. Again talking therapies can be useful to offload any pressure, stress that you may not want or feel able to talk over with friends. I hope whatever you wish in life be it going to uni or any aspirations you have that success and remember don't let RD get in the way of living. It may mean living it a bit different and not always in the 'fast lane' so to speak, but live it to the best you can be. Time is a precious gift and I was reminded of this only 9 weeks ago, so we need to make the most of it with or without RD. x
not at all, any advice is good advice as far as i’m concerned. it’s nice to finally have people to relate to, i’m really thankful !! and you’re 100% right x
Amazing advice here Olivia, don't ever forget you are No. one person and there is lots in life you can and will achieve. It is known that people with RD are very strong minded/determined people with lots to offer.
You mention that you would like to go to University, have you thought re the Open University. If you are on a low wage, they will help with fees for your course. They offer a huge amount of subjects to choose from. I did mine in my 'fifties', so wished that I had studied much earlier. It gave me confidence, in the Offices that I worked in, I was well able to work for the things that I was interested in; gaining the empathy to help others too. In Retail you are using computers, would an Office Post suit you also? In large organizations, you can/will work your way up the ladder.
Hoping the MTX injections soon work you. Take Care
Hi Olivia. First things first, definitely change to MXT injections which bypass the stomach and have less side effects - coping with the horrible sickness on top of everything else is soul destroying. I was so angry when diagnosed a year ago and didn't feel I could talk to anyone, even close friends eyes glaze over when you mention RA! I went to counselling via Healthy Minds which is an NHS resource and therefore free - it really helped me to just talk freely to someone at length without feeling I was boring them. Also what I must say to you is well done for coping as you have up to now and also continuing to work - give yourself credit and be proud of yourself. I don't work and am in total awe of anyone who works whilst coping with RA. Ask to speak privately to your manager about your hours and duties to see if you can reach a compromise for now until you are ready to look for another job. Please know that you are not alone and we are all with you, sending virtual hugs Michele xx
thankyou so much michele i really appreciate it. i’m hoping these injections are better and i will take your advice and speak to my manager. thankyou for your help xx
It is indeed very sad to have RA at your very young age. I was diagnosed in Jun 2014, I was declared remission in Nov 2015. I have been taking mtx and leflunomide for my treatment. Yes, these DMARDs had been given me a lot of side effects, but my rheumy said that the benefits that I would get from them would be very much more than the side effects, she said she would monitor my liver indicators, she wanted me to tolerate the other side effects that made me very sick. I am glad that most of the side effects were gone after more than a years. The uneasy stomach vomiting feeling was also gone when mtx dosage was reduced to 7.5 mg a week.
When I was at the peak of my RA back in 2014, I was in great pain and very depressed as I had no one around me. I suffered alone until my daughter came home after a month of suffering alone. I thought of committing suicide, but the next minute my youngest son had come into my mind, he was in his first year in college, he needed my support so I must fight back and be strong to keep going.
I talked to whoever I met around me that I had RA and I was in great pain and I needed help and rest. I ignored if they understood or not, I just wanted more room for myself to rest as much as I could. My mom could not understand, she told me back that she also had pain here and there.
I was lucky that my bosses were very good. I had been working in the same office for more than 13 years, my bosses knew that I had been a very healthy and hardworking person. When they saw my condition then, they just gave me a lot of room to rest. At time, I even slept during office hours, and that was okay with my bosses.
I worked very closely with my rheumy and physiotherapists. I would not take any supplement without the approval of my rheumy. I consistently kept to the low impact exercises routine twice daily as instructed by my physiotherapists.
What I like to say is, it takes times for DMARDs to work for you but you need to work closely with your rheumy and physiotherapist. Once the medicines are working on you, your pain will be reduced slowly. Give yourself sometime, you will be able to live a normal life again.
Do let your friends know of your condition, whether they understand you or not. Just let them know. Those who understand will try to help you. For those who cannot understand, just let them be, focus on your health first.
Most importantly, talk to your boss in your work place, get his understanding to allow you to work a shorter hours, this is crucial. Also let those who work with you to know your condition so that they can also help you along the way.
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