Hi All,I am new. Seropositive RA diagnosed this year and on a treatment which I think works and grateful for that. Taking hydroxy every day now with some side effects which are under investigation.
I felt summertime was when the illness was hitting hard. Swollen joints, some deformation on feet and hands, exhaustion , fatigue, pins and needles. I went through few flare ups before and during treatment and they were debilitating. Currently living on my own and I am terrified of how the life is going to be for me.
I am still in a process of accepting the diagnosis and feeling very emotional. I basically cry every time I talk about it and surely cry when I have to explain myself to others. The most painful for me is the fact that my family is taking it so lightly. I feel like my whole world has collapsed and I heard I was panicking and I should be alright after taking vitamin D. I was called a liar and that I was exaggerating my condition. I heard that I felt pity for myself. And I think maybe I am but I am scared so much.
I really don't know how to deal with it. I stopped talking to my sister and avoiding certain topics with my mother but hurting a lot. Cannot understand of why they have so little compassion. I think I need some professional help. Don't think I am strong enough to accept it without being listened and I need a space to talk about it openly.
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Green_frog
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Hello. I was diagnosed less than 2 years ago and I too have struggled with my diagnosis and what it meant. It is great that you are on medication that is working. This is an important step for giving you the space to come to terms with things. Don’t worry about being teary and upset - you are not the first person to go through it. And some self pity is also completely understandable. Don’t be hard on yourself for being upset and struggling with a life changing diagnosis.
I am very sorry that your family have been so unsupportive of you. That clearly hasn’t helped. I would definitely encourage you to seek some help, You could even start with the NRAS helpline.
Think part of the problem is that everybody’ s granny ‘ has a touch of arthritis’. That’s not the same thing as RA at all - as we all know.
You sometimes wonder if it would be better not to mention RA or rheumatoid disease as some people call it and just say you’ve been diagnosed with an autoimmune condition If anyone asks what type of autoimmune condition say that your consultant isn’t sure.
Ask your doctor if you can talk to someone about it. There is somewhere that has been mentioned on here before but I can’t remember the name of the project, hopefully someone will know what it is and give you the details.
“Social prescribing “is an all-age, whole population approach that works particularly well for people who have one or more long term conditions who need support, with low level mental health issues,who are lonely or isolated,who have complex social needs which affect their wellbeing.”
I presume one’s GP would be able to connect a patient with such a service?
I struggled when i was diagnosed with RA i felt like i had been hit by a bus. I have been lucky in that my family have been a great support. My moan about my family is they know i am ill yet they are so used to me being ill i feel they are rather Blaise about it. They are very good if i ask for help, but my problem is i won't ask for help. Keep on telling your family they will believe you eventually. Cry if you want it will release the stress your under darling. Sending hugs.xxxx
I suspect that all here have felt exactly as you, especially in the early days. No. Nobody 'gets it' unless they or a close relative or friend has it. It's a much misunderstood condition and, I swear, if one more person says something like "oh my granny had that in her knees" or "oh I had that but it went away" I will lose all reason and start being very unpleasant.
Yes , it is so upsetting when people say that - I have tried to explain how RA differs from their ‘arthritis’ but feel I may come across as preaching . I think a lot of acquaintances don’t really care about the difference anyway , so I don’t try anymore .
It's completely understandable that you're feeling the way you do, RA can be associated with great losses in day to day life, and although many are hopefully temporary while the right treatment is identified, there's a lot of uncertainty around that - especially in the early stages.
I'm sorry to hear your family are unsupportive and/or uninterested in what you are going through. Mine were much the same. It is very painful to experience this as well as the condition itself, but there are other sources of support out there. Fruitandnutcase has pointed to the Wren Project, which is a great support if you need a supportive space to talk about what you're experiencing - I've accessed this service myself. NRAS also has a helpline you can call, and perhaps there are patient groups in your area (or online) where your experiences will be understood. Personally I found it helpful to watch videos people had shared of their experiences on youtube as well. It helped me feel less alone with it and also gave me hope that things would improve (which they did).
I really feel for you, and am so glad you decided to post on here. This forum can be a wonderful source of support and information too. Wishing you all the best, and hoping you find more support than you currently have as you go through this.
a lot was going on in my life at the beginning of the year plus every time I saw a consultant or GP they would add another autoimmune condition and I was overwhelmed. Plus trying to house move in a horrendous rental market and hubby having depression.
Nras mentioned the wren project to me and you can dona self referral on their webpage and they are fabulous! No medical advice no how to just a place to vent!
First 6 sessions I cried every time but the last 6 I started To breath and smile then laugh again. Even hubby would say you come off the phone from them happier!
2 weeks ago I was struggling with a lung diagnosis I emailed them and they gave me a one off venting session and feel so much better already!
Thank you I have made a move today and contacted my someone and asked for sessions. If this doesn't help I try your suggestion. I'm sorry to hear about all your struggles. Hope you are a bit better now.
I just learnt to pace my life when I can and when it gets too much I do some talk therapy as friends and family are too close. I need someone out of the equation to make it easier to be me and say what I want to say with no worry of upsetting anyone.
Ra is a long term illness and can take awhile to get your head round it all x
Very similar feelings. And I guess if I had an arm or leg missing it would be obvious. When you have been fairly healthy and RA comes along it can be very daunting. Try to seek help from friends or professional help.
Know one thing we have all had these lows and you are definitely not alone.
I was very athletic. I was jogging regularly, swimming. It's totally out of control now. I can dream about going back to it and people making assumptions that I look healthy I must be making excuses about the pain and fatigue.
I think you find your way eventually. I am fairly new to it older than you. But yes felt relatively fit and well. Some of my family don't understand it too.Have had the usual I have a touch of that. I choose who I tell I don't feel I have to tell everyone. Ex work colleagues told me you look well and I think if you knew. I don't want sympathy either. I have one relationship who gets it driving me suggesting pain relief letting me know if someone is ill to avoid. For some it's about education. When they see me irritated dropping things. taking painkillers struggling or I am planning a walking trip but tell them I hope I will be well enough or I will need to adjust plans. They start to understand what RA means. Best wishes.
It is such a shame that so few people understand the condition - they don't get unless they get it.
this is a good place to start for sharing those down times when you feel really low. Take some of the advice given such as The Wren Project or social prescribing if it is available from your GP. We all feel your pain and desperation but try to stay positive and get hold of some of the many informative leaflets about the disease for your family to read, Good luck on this journey❤️
I struggled too. I was diagnosed with PsA during Covid, it nearly drove me mad, really isolated, lots of panic, it cost me a relationship. It’s been bloody awful but it has got easier. I have stopped talking about it though, no sure if that’s a good thing, but I certainly feel better mentally.
Never stop until they understand. I have fa.ily members who shrug it off. And some ate sympathetic. But now really get it . So don't stop till they do.
First thing to do is explain what RA is,if they don't understand Google it thent print it off so they will know exactly. Problem is they think it's some sort of bone disease like athiritus which as you know it's an immune system problem once people realize it becomes easier,plus hopefully your consultant will get the meds right and you will feel better,good luck.
I did but I felt like there was no interest in what I was saying. They are not interested and I don't want to force them to listen. I don't have to mention I feel pushed away. This is new to me.
If I had a pound for every time someone says I have arthritis in my knee,back and hands I would be a rich woman. This is an autoimmune disease not wear and tear. I do understand how you feel. People need to be educated. Take care and enjoy Christmas as best you can.
It can be extremely daunting to accept that you have an autoimmune disease and lack of support from your family must be extra hard 😞😞. I’ve had a similar experience with my mum, who has absolutely no empathy whatsoever!! I just don’t discuss my conditions with her now.
The Wren project are great and it’s worth getting in touch with them. You get a space to just talk about exactly how RA affects you, both physically and mentally. If you need further help, then seeing a counsellor may be a way forward for you.
Hi Kati66,I have exactly same situation now. My mom went through cancer twice and she never complained never talked about it like it never happened. I guess that was her way of dealing with things.
I stopped talking to her about how I feel. She didn't want to listen and was changing the topic constantly.
I am seropositive RA for 5 years now. Though I never went through the "why me" phase, it's true that other people don't really understand. And if you put yourself in their shoes, and maybe examine yourself, maybe you didn't understand something that someone else was going through. But I have a great recommendation for your mental health. An anti-inflammation diet really can clear that up. Eliminating gluten, refined sugar and dairy can make you feel like a new person.
Totally changed my health and got rid of depression and my other so-called comorbidities. It's weird because I'm diseased, with three autoimmune diseases, and yet I feel better than when I wasn't diseased😂
Thank you. It would be great if diet solved this situation I guess this problem would disappear. Unfortunately it has nothing to do with it. I believe in open talk. You care about someone you want to talk and help that someone. It's not moaning but trying to realise what can be happening with you when one is not well. Besides I have already done that. It was literally first thing I did early this year. I was always looking at what I put into my body, now even more strict. I can't imagine having better diet than now, maybe only by having all organic food but that is so expensive these days. Financially difficult to maintain.
I would like to add also. This is not a phase of "why me". I think this is behind me already. It is more of I have aches, feeling tired, fatigue, getting sick easily etc as we all know. People/my family are thinking I am angry with them but this is not the case. So I try to be open about what is going on with me and why I don't talk too much. So they are not offended in any way. And here it comes protest. If I talk they don't want to talk and brush it off. When I don't talk they are complaining that why I am so gray and quiet. I mean you can't win this.
Family and friends are never going to understand. You have to find a way to be resilient within yourself. You don't have to explain your aches and pains. And maybe they don't want to hear about it because they are afraid of perhaps getting diseased someday. You are valid with your aches and pains. You don't need someone to validate that. Although, if you can find someone that listens and understands, it is a comfort. I suppose there are a lot of people on this forum who will validate you
I don't need validation. I need understanding. Yes surely they don't want to hear about it. There is nothing they can do. It's sad tho when your family doesn't support you. And I am grieving as I don't have that support. Makes you realise you are on your own with this.
Sorry to hear about your previous diet. It must have been incorrect if I may say that. Glad those new changes made so much difference.
Awww so know how you feel and it's typical of early days how you and others react.
The crying is due to really going through a type of grief/loss because you're not able to do things you previously did and have a raft of adjustments to make which is overwhelming.
Only time I cried was telling my husband , due to knowing he'd never get his head around my needs , despite being kind and willing. You discover ones usually supportive can't handle this in you. I have a friend still love her to bits who also has a husband who got this about same time as me so for her the ones she depended apon are fragile. She's not good dealing with ill health, I accept this with her & we stay friends, helping each other in ways we can manage. My brother has no concept of my health & is annoyed cos my help with our aged mother is no longer possible, so falls on him. What I'm saying is our health condition freaks ones out, they feel powerless, have no idea what to do and think offering (useless) solutions is good.
So I have used talking therapy, anti-depressants (prescribed) the advice line for the RA dept to resolve physical needs, use adaptions, this site ( truly wonderful) chiropodist, have pedicures with reflexology, massages,and recently a home help , who helps with cleaning, shopping & for me to offload. I have no qualms asking for help of ones who get it.
Take things hour by hour then day by day, as you say find out what support you can get professionally. Use sites like this , Versus arthritis etc to inform yourself how to cope. Ignoring ones that are draining is fine, when you're stronger is the time to mend bridges. You haven't stopped being you, despite the way it comes across from ones who don't understand.
You are right. They are not able to advise and help. It is too much so it's better to ignore it. I wish to ignore it and pretend it doesn't exist. It may go away then maybe...
I think your Mom may be overwhelmed by seeing you so distraught and in so much pain. Maybe she can't be a good support person. Do you think that your medication is working? Are you now able to do most of the things that you did before the diagnosis? I am wondering if you still don't feel very well because I think that when you are on a medication that makes you feel a bit more like normal you will start feeling a lot better emotionally. And people, even professionals, will say the most uncaring, ignorant and hurtful comments. I usually ruminate on these comments although I know I shouldn't. Take care.
Yes you are probably right about my Mom and silly comments from even professional people. I don't have those mechanisms that would allow me to ignore both. Working on that. My meds allow me to do almost all things that I used to. Except I don't jog anymore. There are some side effects which is connected to my eyes which is being investigated. I have bad days and those I stay indoors. On a good one I am nearly normal. So yes it makes me feel somewhat going back to a normal life.
I need to work on handling comments also. I am still deeply sad that I have this disease. I am fearful of the future, also. I don't know if I will ever get over this feeling. It is really hard. I just try to recognize that there are lots of happy things in my life, also. It has been 4 or 5 years for me now. I have lost friends because no one really wanted to hear about anything that was happening and after several comments that bothered me I just stopped talking. Then the friendships weren't satisfying. Plus, people wanted me to be the same as before and I am just not the same. I hope that you find ways to handle some of the hurdles that I wasn't so great at. Best wishes.
Same really. I wish I could turn back time just for over a year and do something that would allow for the RA never resurface. I have one friend she is standing next to me. Everyone else has gone away as there is little we have in common. Before I was the one who listened now there is little or noone for me to return the favour. Its okay. I will try to manage. Wishing you all the best!
Hi - I’m sorry to hear about your new diagnosis and you are struggling. You’re in the right place here, as we have all gone through it.
Personally I’ve found people in general can’t appreciate what you’re going through unless they have it themselves. I have two work colleagues, one has PMR and the other Lupus, we are each others support mechanism.
Thinking positively, I am on my own and although you do worry, like if you have a bad flare when you struggle to maybe get out of bed or get in and out of say the bath because of the pain (I’ve been there), there will/should be help in the form of your GP, Consultant, Nurse, who can try different medications, a short course of steroids maybe, to get you back on your feet.
I’ve had counselling too, which has helped.
I hope once you come to terms with what is a horrible disease, you will find the meds that work best for you, have long periods of remission, and continue to live a normal(ish) and productive life. It’ll take time for your family to understand, problem with these autoimmune conditions is we all look normal on the outside, but inside we feel terrible.
Stay strong, and keep posting on here for support and let us all know how you’re getting on.
Hello Green_frog, and welcome. I joined this forum a few weeks ago but I've had RA for over 20 years. I understand how you feel, as when I was first diagnosed, most people dismissed it as minor aches and pains even though I struggled to get out of bed and get ready for work (I was also living on my own at the time). My parents, however, were at the other end of the scale - they didn't want me doing anything at all and became quite suffocating, but I know they just wanted to help. All I wanted was for people to listen to me, and try to understand my condition better. Even after all these years, people still don't understand. When I try to explain it to people they usually say they know all about arthritis - but clearly they don't know much at all about RA and the additional complications it brings.
I think there's really great advice in the comments here, and the forum in general, and I hope that you can shut out other people's negativity and focus on yourself - both your physical and mental health. Take care, and know that you have a lot of support here. xx
The first 2 years I found the hardest as going from strong independent and healthy , I found myself struggling to even brush my teeth.
I lost my job , my health and my home because of this illness but as we find a med that suits and focus on acceptance and what we CAN do life gets on a more even keel.
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