How can i explain RA to my family??

[MistyMarie]

I'm newly diagnosed with rheumatoid arthritis and my family seems to be getting upset when i can't do what i normally can. They also don't understand how sick i get after taking the methotrexate. I can't seem to figure out how to get them to understand how i feel. They see the swelling and weakness but still don't understand how painful it is for me. I have pain in my hands, wrists, knees and feet. I'm currently on 10 mg methotrexate (weekly) and 40mg prednisone (daily) any help is extremely appreciated!!!

[sylvi]

I am afraid you can't, i wish there was a way for you to let them know. What you need to do is get as much info as you can and show them how it affects you,but then they still won't understand.They cam emphasise but know the pain no they won't. Tell them it is like facebook when it is on a go slow and it takes a long time to get things onto it,well thats how you feel. I don't know if this is of any use to you.xxxx

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bbc.co.uk/programmes/b009y1t6

If you can play this to them in your iplayer it might really help I think? Its not that long but it describes RA and our drugs, including MTX, rather well I felt and its quite clear and simple - a consultant rheumatologist is good too.

Welcome to this site you will get lots of helpful advice abs support here I'm sure

Tilda x

[Nildesperandum]

Hello. I am newly diagnosed too. I think my husband understands but the teenagers don't really get it. I think they think I am egging it up! Maybe they dont but that's how it feels. I have just decided to go at the speed that's right for me, unashamedly take the rest i need, and to ignore any negative vibes that I feel come my way. It could just be us being over sensitive at this stage anyway. They will all understand quicker if we don't keep trying to push ourselves to keep up the old levels of activity!

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Nras do some good publications x

[MistyMarie]

Thank you everyone!! I'm just so not used to saying i can't or i need help but I'm just gonna have to get used to it. Nild that's exactly howi feel, like they think I'm faking or making it worse then it is. In my case it's my boyfriend of thirteen years and my mom. I guess it it's gonna take some time for them to come to terms with it just likei have to. It feels good just to have people to talk to. Thank you!!!

[Hidden]

NRAS can help with some brilliant publications,

Also I found the spoon theory helped me explain to some off my family n friends here's a link

butyoudontlooksick.com/navi...

The only real way is to be open and honest with them, tell them how you feel and that you need help and support.

I'm very lucky to have an amazing partner and close family who really do care, understand the best they can and always there to help.

However most off my friends have been a nightmare to get thought too

Good luck

[Neverwell]

Hi I had the same thing so I got books from hospital and gave them to my daughter and son son flicked though not really reading them daughter read all of them then I told her to google ra and we sat for a couple of hours her asking me explaining as best as I could you have to say no when your in pain or shattered take it at your pace hope this helps

Karen xx

[shirlthegirl]

In a way i suppose i was lucky as my brother has had RA for 15 years, So my husband and other members of my family are aware of how serious RA can be if not treated,but with the pain and other symptoms i think it is going to be really hard for them to really understand, Even thou my hubby is supportive, i still don't think he will ever understand what it is like and how i feel, When i went to see my Rheumy Nurse she gave me some booklet to bring home which did help, Maybe you could ask at your next appointment XXX

[Mumoftwin17]

RA - fibro, loved the link on the spoon theory!.....Also the BBC link from Tilda ( Iknow this little cottage hospital well.....(wish I had gone there now as the Dr sounded lovely!) His explainations were good and honest....

Mistymarie...I have a family that dont get it as well...yeah it is hard......But self preservation has to kick in at times.....

wendy xx

[Paula-C]

Don't know if this will help.

I saw it once on another forum and I think it's good.

AN OPEN LETTER ABOUT LIVING WITH RA

Dear Everyone,

This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?

If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.

Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.

Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.

Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.

Thanks for listening.

With love

Me xxx

Paula x

[MistyMarie]

Paula that is absolutely perfect, thank you so very much, all of you!!!! Just having people on here to talk to makes me feel better!! So as I'm laying on the couch eating my saltines since today is my nauseating mtx day i want to say thank you for accepting me on here just as i am

[Hidden]

Sylvi I think Paula is right about a letter. However, a short time ago someone posted a story on how she could get her friend to understand her illness. I used the story on my brother and he gets it. You can google " the spoon theory" you just switch what your illness is (RA) from their illness. I know it frustrating, but I will keep using the spoon theory as long as I need to. So sorry! Hope you feel better and get them to understand..

[crystal029]

I havent been diagnosed yet but I ve been told by my family dr that shes sure I have RA Im going to see the RA dr in July and I hope I can finally get some answers so I can tell my family something, Im so tired and sore most days and I hate having to explain why Im sleeping so much, Im currently living with my parents and Im on a disability pension, my ex left me 3 years ago one of his main reasons was that I didnt do things with him and wanted to sleep all the time at that time I thought it was just stress and some problems I had with my back and depression, I guess in sickness and in health meant nothing to him in our vows, he doesnt understand how I feel still to this day, when I ask him for money for alimony which he promised me he tells go get a job and stop living off the s system, he makes me so angry and makes me feel so bad about myself, I guess I should be happy hes out of my life, but some days its hard being on my own I wish I could have a partner that understands.