I live more consciously and also accept help now
Ella, 54 years old
"I find it really important to talk to other people with rheumatoid arthritis. It makes me realize that a lot of people live with this disease, and can live good lives too. That helps me feel less worried."
I noticed the first signs of my disease in my early twenties. But I was only diagnosed with it at around the age of 40.
I kept getting back pain and pain in my hip too. It gradually got worse over the years, until it was almost unbearable. It really affected my ability to move around.
The doctors thought it was lumbago
Then, one day, I could hardly move at all anymore. That happened quite suddenly and I was in so much pain. I then went to hospital and had intensive treatment there for four weeks. The doctors thought it was a severe case of lumbago at first. I was given all sorts of treatments, but it only ever got better for a short while. The worst thing for me was that I couldn’t sit properly anymore.
I was then referred to a clinic that specialized in spine diseases. There they found out that I very likely had an inflammatory rheumatic disease, arthritis. But it wasn’t yet clear whether I had rheumatoid arthritis or psoriatic arthritis.
I had to switch medications a lot
After receiving the diagnosis, I still didn't know what exactly that meant and how it would affect my life. At first they gave me an immunosuppressant drug as a basic treatment, but I didn’t tolerate it well. After only two days, my liver function had worsened so much that the doctors had to stop the treatment with that drug, and I was given only steroids for a while. They don’t put stress on the liver. Because painkillers have to be broken down by the liver too, I couldn't use them either for a while. Once my liver had recovered, a different medication was tried out. Luckily I tolerated it a lot better, but it took several months to start working. At the time I didn't know that I would have to take the medication over the long term, as a basic treatment. I thought the treatment was only temporary, until the disease had got better again. I honestly had no idea that it was a lifelong, severe and chronic disease! I kept having to try out different drugs, either because I didn’t tolerate them well or because they didn't work well enough. For many years now I’ve had to take steroids the whole time too.
I think I’ve tried out most of the rheumatoid arthritis medications on the market over the last few years. I’m particularly nervous about the newer drugs because there are no long-term studies on them. And the other drugs that I have to take cause enough side effects as it is, and they interact with each other too.
Other joints are affected now too
The rheumatoid arthritis has started affecting almost all of my joints now. The worst joint for me is where my breastbone and collarbone meet. It’s called the sternoclavicular joint. I’ve already had six operations on my joints. Several of them were on my shoulders, and on my jaw too. I’m going to have more operations soon, on my ankle joint and heel.
I’ve already had ten bone fractures in my spine, my pelvic area and especially in my feet – just like that, not due to falls or anything. I have severe osteoporosis because I’ve been taking steroids for so long. On top of that, I also have another severe immune disease which is related to my rheumatoid arthritis.
Because of the effects my illnesses had on me, I had to retire early, at the age of 46. That was really tough for me. Almost worse than the diagnosis itself. It was such a blow to me at the time. I still have days when I realize what it means, and it hits me hard again.
I have to take my life into my own hands
I tried to ignore my disease in the first few years. I had a life with the disease and a life I would’ve liked to live without the disease, and I tried to live both of those lives at the same time. Of course that couldn’t work.
At one point I realized that the most important thing for me was to look after myself. I wanted to do all I could to take good care of myself and start enjoying life again. This is how I see things: In phases when I feel good, I fill a treasure chest with nice things that I can take out when I’m going through a bad phase. The treasure chest is then filled with things like going for a coffee somewhere nice – which is a special treat for me – or calling someone on the phone for a chat, going to the movies, or to see a concert or a play. I’m quite a musical person so concerts are good for my soul. All of the things in my treasure chest are very special to me, and that helps me when I’m going through tough times. There’s no point in only trying to “fill” it when I need it, that would be impossible during bad phases. It has to be ready beforehand.
Changing the way I see my situation has really helped me. I no longer feel like I’m at the mercy of my disease. Instead, I’ve realized that I’m the one who has to do something about it, and that I’m able to do that too. I’m responsible for myself. Nobody else can live my life with the disease for me.
I do voluntary work
I’ve changed a lot of things around in my life since retiring. I’m now very involved in voluntary work. For instance, in self-help activities. I wanted to give my disease some sort of meaning. There’s always a way – but you sometimes have to look for it before you find it.
The voluntary work also helps to structure my daily life. I need a task, to feel like I’m doing something useful. I didn’t want to just fall into a deep hole after retiring. And I didn’t want my knowledge and experience to go to waste.
The pain is a part of my life, but not the focus
I feel the pain in my bones, joints, tendons and muscles. Sometimes I can’t tell exactly where it's coming from because it radiates – for instance from my wrist into my forearm, from my shoulder into my elbow, or from my knee into my hip. The inflammations in my tendons are especially painful. The pain is sometimes a permanent pulling pain, sometimes a throbbing pain or a sudden shooting pain. It really wears me down.
I find it very hard to sit for any length of time. I then often have to get up and walk around a bit, or change my position. If I’m at home and it gets worse, I sometimes lie down and listen to music or read a bit. I also like to solve puzzles, particularly at night when I can’t get back to sleep. Or then I get up and make myself a cup of tea.
I play several wind instruments, and am saving up to buy another instrument of my own. That’s one of my goals. It’s a “highlight” in my life that distracts me from the disease and recharges my batteries a little. It helps me to forget about everything.
Dealing with the permanent pain is also an important issue for me. Because of my liver damage, I can hardly take any painkillers, certainly not frequently. There are only a few types of painkillers that I can use at the moment, when the pain is particularly bad. So I’m used to mainly putting up with the pain, which is often quite severe.
I’ve learned not to concentrate on the pain, but to accept that it’s there, just like the disease is. The pain is a part of my life, but definitely not the focus.
I had to learn to deal with my disability
Several times in the past I’ve had to wear a splint on my foot for many months at a time. That draws attention, of course, and people often look at me strangely. At first I felt really uncomfortable when people stared at me, but nowadays I tell myself that they’re just curious. People don’t understand how unpleasant it is for us. You have to learn to deal with these things. I've got used to it now.
Unfortunately I’ve had my fair share of depressive thoughts too. Having to retire early really got me down back then, and I still go through bad phases now. For instance, if I have acute problems, or need to change my treatment or have another operation. Nobody can guarantee that things will go well. You're left to deal with all of your worries and troubles alone, and have to try to make the best decision for yourself. I always need a bit of time to come to terms with, and accept, new situations.
I find it really important to talk to other people who have rheumatoid arthritis.
My support group is very helpful there. I can share my experiences and thoughts with people who understand what I’m going through. I feel like they accept me as I am and I don't need to explain myself. It’s a place that gives my disease the space it needs. It doesn’t always have to be in a support group, though. I sometimes chat to other patients with similar issues in the doctor’s waiting room too. I’m still close friends with some people who I met during my rehabilitation treatment back then. At first I was very skeptical and didn't want to have to listen to other people talk about their illness as well. But I now know that sharing a similar fate can be a bonding experience too.
Devices and gadgets help me in daily life
I need various daily living aids now. It’s not that easy to find an aid that you really need, and that really helps. So it's a good idea to get advice, for instance during rehabilitation treatment or occupational therapy. You can even get advice on how best to set up your office space, ranging from your computer and monitor to furniture.
One thing I could no longer do without is my extra long shoehorn, it's such a blessing! It means I don’t have to bend down anymore. I wouldn’t be able to get my feet into my shoes without it. Special gadgets to help you open screw tops are really practical too, and I have wider pens that are easier to hold. Last, but not least, I have various devices to do hand exercises or improve my mobility, like special balls for my hands and fingers, a special cushion to sit on, and a wide elastic band for doing exercises.
I think it's really important to talk with each other
The disease has often led to communication problems – within my family too. There are a lot of misunderstandings. I think it’s important to talk with each other a lot and also be open about your feelings. It’s especially hard for your family to see you suffer but not be able to help. It's hard for them to bear. There are often misunderstandings that take a long time to clear up, or you just don't talk to each other. It can be hard to admit how you're feeling – for both sides.
I live more consciously and also accept help now
I live more consciously ever since getting ill. I often take the time to think about things, which I didn't consciously do before. I also think about death. I see it as a part of life. I enjoy every day, and all of the beautiful things in my life. If I have a bad day, I tell myself that the next day will be better.
I think it’s really important to find out everything you can about the disease, the medication and other treatment options. Talking with other patients is especially important. Because sharing the same fate makes you feel closer and helps you to realize that you can lead a good life despite the disease, and also that you aren’t alone. It makes you feel stronger and less scared. This disease can change your life from one day to the next. Nothing is the same again!
You should get help if you're struggling. You can't – and shouldn't have to – do everything on your own. I admit that I don't like asking for help either. But you can learn to accept the help of others.
Rheumatoid arthritis doesn't only affect your joints. It affects the whole person and those around them, as well as their interests, abilities, possibilities and view of life. Nothing is the same again. But it always depends on how you see things, too. I try to change the way I think about my disease: Sure, there are some things that I can't do anymore, but other doors have opened for me instead. I’m also really grateful that I was lucky enough to experience a lot of different things before getting ill, which can't be taken for granted. I can now look back and remember them with a smile on my face, even if I have to live with a lot of limitations nowadays. I’ve spent a lot of time thinking about everything, and am much more grateful for what I have. Who can guarantee that things won’t change tomorrow?
I now see my life as a gift to be valued.
Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.
The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.
Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.