Rheumatoids at 20

Hi guys,

I'm 20 years old and I was diagnosed with RA last month and it has honestly feel like my life has gone down hill ever since.

I've always been so sporty and energetic and now I'm constantly tired, nauseous from the medicine and find it hard to get out of bed some days. I can't even go up a flight of stairs anymore without having chest pains.

My work didn't believe me when I told them I had RA so I'm going through a grievance procedure due to that too so that's another thing to worry about.

But on the other hand, my mum is a health care professional so she understands how much pain I'm in and how strong the meds are, which is comforting. And I'm meeting my university's disability support service tomorrow to talk about what support is available for me so that should make my life a bit easier.

I just feel like such a disappointment. I feel like my family and friends saw me as someone with a lot of prospects and a bright future but I'm not even sure whether I'm going to make it past 30.

I'm sorry to be so negative. I'm not in a good place right now. It'd be so nice to hear your stories and how you've gotten through life with having RA.

15 Replies

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  • Oh babes , I remember that feeling so well. It does get better, the initial shock of diagnosis is hard.

    But the good news is you already are looking at getting support and the help you need from uni and docs.

    Give the NRAS helpline a ring too as I felt they were my lifesavers and really understood.

    Things will improve with your meds, if they don't suit you tell the docs, there are plenty of others available .

    Keep chatting on here and just don't give up , get as much help as you can and rest when you need to xxxx

  • A quick reply, but please hold on to the fact that this is the worst time for you. It's shocking getting the diagnosis, especially at your age, and starting on treatments that can be hard to adjust to. But it really does change. I'm now 95% normal again, thanks to the drugs. It took nearly a year to get through this first awful bit, but I came out the other side ok.

    Sites like this aren't completely representative, as tend to have more people with the more unmanageable types of RA. But about 80% of people do absolutely fine and live ok with RA, so chances are that you'll be one of that group too.

  • Welcome to the site. You have every reason to feel negative at the moment. Being diagnose so young is overwhelming but you have a chance to put this disease in remission as it was caught in time. I know it's hard to believe but many of us RA patients go on to lead normal lives. Once your meds start to work you again will have a bright future.

    Sounds like you have a loving mom. Relax and allow your mom to support you emotionally and physically until you are on your feet again. That's what us mothers do best.

    All the best to you

    Sue

  • Hi you will get there girl so hang in there and once the drugs start working you will feel better it will take time but you have youth on your side good luck and try too keep chin up xxx

  • Hi your young but you,l cope cos you have to, im 59 and ive had RA for 16 yrs. So s lot older than you when i contracted it but what your feeling is what we all go through when we hear our diagnosis, that said i really do understand how devastated you must be feeling especially as your so young. But that could also work in your favour as long as you get a good understanding consultant. For the first couple of yrs of my RA i was tried on different drugs and nothing seemed to be doing much ive allways been on methotrexate,12.5mg weekly just now, also anti inflamatorys and a bit of folic acid to prevent nausea, but it wasnt until i was put on humira, i inject this once a fortnight, that my life did start to change. I was close to being bedbound then 4 wks after starting on the humira i was full on back at work. Im a self employed builder. Still a bit of pain most days but theres ways of monitoring that. Ive been on the humira for a about 13 yrs approx now and still at work same job. Good luck to you, keep a positive attitude, be strong and when the RA gets hard be hard with it.

  • Poor you - I know people in their 80s with RA who like you had it at an early age - things will get better once the drugs get sorted. The NRAS will give you tons of advice on sports etc that will improve your stamina. My life improved when I started injecting Methotrexate instead of taking tablets - it stops the nausea. There are lots of young people with RA the NRAS will put you in touch with them. Don't despair you will start to feel better x

  • So sorry you are having to go through this, and at such a young age too. I'm only recently diagnosed myself, so cannot offer any advice or guidance on RA drugs or on coping. But I do know how devastating it is receive this diagnosis. (Physically, I only have the vaguest of symptoms, but emotionally and psychologically, I really struggle.) Really hoping things improve quickly for you.

    Don't feel disappointed in yourself. I'm sure your family and friends are filled with concern about you, not disappointment. But maybe, like me, you need time to grieve, for the loss of the life you thought you were going to have. And time to adjust to the life that you will have - a life that includes medication, tests, hospital visits, but also positive, normal stuff too.

  • Hi gap1995

    I was 34 but it took 10 months to get diagnosed and another year to sort out meds for me. So it's been quicker for you. I used to go to the gym 5 days a week walk all over, go out dancing etc, then I was suddenly unable to do anything but lie on a sofa watching my children carry on going to school, my husband going to work and leaving a sandwich and a flask for me. Like you I thought my life was over. It took a while but once I was on the right meds, going back to the hospital got less and I started to get my life back. Now I am in my 50s and can still move although it is getting a little harder. Think of the next week, then the next month, don't plan too far ahead, then you won't be disappointed if you have a bad day. Give it time, let you mind change and come to terms with limitations and deal with them as they come up. With lots of help from professionals and friends and family you will find gradually you will go out and do some sports, go to the gym, and enjoy life.

    Good luck with Uni and your future. Being so young you should have less degeneration and so be able to go back to a really good life. It's doom and gloom now but try to think positive even just a little, it does help.

  • Research (NRAS and Arthritis Research have good websites) and take control. It is not easy and at times feels like you are on a roller coaster with the huge up and downs but life goes on and you have to try and make the best of it. I was diagnosed at 19 and am now 49 and have 4 children and was among the luckier ones in that during pregnancy symptoms eased - the last one probably pushed the body too far and symptoms quickly returned.

    Unfortunately it takes time to find the right combination of medication to control the disease also taking into account that most meds take up to 12 weeks to be effective and if they do not suit you the next one will take the same amount of time. Keep your own record (excel spreadsheet?) of what meds you have tried and their reaction as very few stay on the same medication over the whole time (whether the body gets used to the meds or the disease decides to take another turn I don't know) - over time one sheet with it all on it much more useful than your hospital file where staff have to search through loads of pages. Try and build a good relationship with your rheumy nurse as they can be a huge support and they often know more about the meds and treatment than the GP. With the modern treatment meds there is less joint deformity. It is hard to balance the side effects of the drugs with the unseen damage done by this disease but for me the meds are the key as I have had 2 years when the drugs failed and was really bad. Some find that certain foods will cause more inflammation but for me I have not identified anything. If possible take you mum to appointments with you so she will understand more and gives you someone to discuss treatment options with other than the professionals. Farm

  • Hopefully when you get on the right meds you'll start to feel better about your situation. I was dx age 6 and don't really remember life without it. I'm now 52, so had it for 45 years. I went through school not being able to take part in games, but was allowed to do some PE. I managed to work for 22 years in an office based environment. I've had two healthy children and didn't have any surgery until 14 years ago.

    MTX has been the best drug for me, I've been on it since I was about 16/18. Hopefully you will have a better choice of drugs and wont have the joint destruction that I now have.

    I took one of my employers to an ET for disability discrimination and was successful, so good luck with yours, if it comes to that. You will learn there's an awful lot of ignorance about RA, but that's their problem, not yours.

    Good luck.

  • I was diagnosed when I was 11. I was more bookish than sporty - just kinda average at sports. The first year I cried nearly every day, felt like I would never get the right balance of meds, turning a door knob, brushing my hair or just walking 20 metres in the morning could be overwhelming.

    We got the right balance. I graduated top of my class at highschool, finished law school, worked in policy. The health has been up and down. Have had to change career paths (am 36 now and doing a Masters in Data Science) because I need something that will be sustainable with my energy levels and eventual loss of mobility. Had two hip replacements in my 20s but they work perfectly - did the Alpine Crossing from the Lord of the Rings movie and got my scuba certification last year. Have been lucky to have a really supportive husband that accepts my illness.

    I have no wrists anymore. The whole everything is balance everything is balance thing is friggin' frustrating. So little predictability. My advice - be gentle with yourself, but don't sell yourself short either. Make the most of the freedom that you do have. Sometimes you will get there slower than other people but life is not a race - you are still the competent, intelligent, awesome person you were before the diagnosis. Just everything has to be a lot more bloody structured now.

    So yeah, some days will be a shit show and you will wake up and just getting out of bed will be omg. But you can still have the things you wanted in life, just not in the way that you wanted them. I can only speak for myself but definitely hang in there. Also no need to try and stay positive all the time that is just stupid. Just, don't let yourself feel negative too much of the time.

  • I feel so sorry for you especially because you are so young. Firstly, I am sure your family would be very upset to hear you say that you are a disappointment. I am sure they are very proud of you. You didn't ask to have RA or give in to it. It is much stronger than you are and nothing you have done has contributed to this nasty disease so eliminate that from your head NOW. Secondly, RA is not life threatening so I can assure you that you will not be going anywhere by thirty or for many years after that. Last but not least, I was like you at the start and thought I wouldn't be able to function properly again. I have done amazingly well on methotrexate (which I assume you are on) and you can too but you need to be patient as it takes a while to kick in and if mxt isn't the right drug for you another one will be found. You must also have a positive attitude and trust your rheumatologist. I know that is difficult when you were so fit but looking forward to being much better is a positive step. Your rheumatology team is there to help you to live as normal a life as possible. Yes, you will have up and down days but you will learn to deal with them. I wish you all the very best. x

  • Hi Gap1995, I was diagnosed with JIA (children's version of RA) at 14. I was on the hockey team and enjoyed joining in with school activities and it does feel like the end of the world. However I can tell you it does get better. Once they sort out your medication, make sure you tell your doctors about the nausea and fatigue, you can start to get your life back on track. It won't be the same as before, but it will be better than it is now. I am now 35 and a teacher (Reception class of 4 and 5 year olds, very demanding and tiring), I cycle long distances (up to 60 miles) and do yoga. I still have fatigue even with the medication, but with the biological treatments available you can live a "normal" life. I hope this helps.

  • I'm 31 & recently have had my diagnosis. Honestly i went through a short stage of depression & I guess it would have been worse if I didn't already understand the disease from my sister. It will pass but should seek advice from your GP. I've always been very active & found it hard to get my head around how much my life changed in such a short space of time. But you what! I love life! I'm so lucky to have the life I have be it with RA.

    You'll be ok. Speak to people about how your feeling. Ask for support when needed. I found people where more understanding than 1st anticipated. Everything will fall into place just hang in there. Xxx

  • I'm sorry but you really need to get a grip. I was 28 with 2 young boys age 9 and 7. I have always looked on my R A as an inconvenience and don't give in. Have managed to still work all the time. At one stage i had a full leg brace to wear and had to ask my son to velcro it on before i went to work until i had a full knee replacement - best thing ever. Tried lots of different meds - now on a biologic. I am now 58 and work part time as a care assistant. Looking after a 4 and 5 year old grandchildren with school runs. People are amazed that i never complain and work hard. Yes it's been a struggle, emotional, frightening, angry. Allow yourself time to accept, get used to your illness. Yes you will have days you'll cry and get frustrated doing the most simplest task. You have youth on your side and time to get your meds right so use it well. Read up on things but go by your gut feeling. Except you will need to adapt to do things and ask for help. More importantly always remember LIFE GOES ON. I really do wish you well. Take care xxxx

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