Everyday life with rheumatoid arthritis

Photo of an elderly couple (PantherMedia / feverpitched)

Rheumatoid arthritis causes joint pain and swelling, reduced mobility and physical weakness. General tiredness, trouble sleeping and exhaustion are other common symptoms. All of these symptoms can greatly affect your everyday life and overall wellbeing.

Living with rheumatoid arthritis isn't always easy. One reason is because it's often difficult to predict the symptoms: They may get better or worse the next day – it's hard to know in advance. Having a "bad" day can be very difficult and make some people feel like they have fallen down into a deep dark hole. This can be made worse by worries about the future because it's so difficult to predict how the condition might develop in each person. But various treatments can stop the condition from getting worse or slow it down.

How can rheumatoid arthritis change your everyday life?

It's common to have stiff and painful joints in the morning, making it difficult to get up and start the day. Everyday chores like cooking, laundry, cleaning, garden work and recreational activities can become a challenge as the disease progresses.

But many people develop strategies to better manage daily activities over time. One example: When you do laundry, you don't necessarily need to hang up the entire load all at once. You could start with only some of the wet, heavy clothes and then finish the rest later on. There are a number of different devices and aids that can help make it easier.

Most people who have rheumatoid arthritis still want to mainly manage on their own in everyday life despite having the condition. Support from family and friends is then especially important. It's also important for them to have a good understanding of the condition and the associated limitations it can cause.

What can help you continue to work?

Work is an important part of life for many people, not only because they need to earn money. If you're satisfied with your working environment, a job often helps people feel like they are doing something useful and is good for their self-confidence. In addition to earning your own money, being around other people at work is often very important too.

Continuing to do their job can help also help distract people from their symptoms and help show them that not everything in their life has to revolve around their disease. Some people even report that their job has become more important to them since developing rheumatoid arthritis, and that they'd rather do less in their free time than give up their work.

If the disease does affect your work, it may be helpful to talk with your boss or coworkers. Your employer may be able to help in some way, for instance by making changes to your workplace or adjusting your break times or deadlines for certain tasks. If changes have to made at your workplace, your state pension insurance ("Rentenversicherung") may cover the costs in some circumstances.

People who have greater limitations due to rheumatoid arthritis may be eligible for an ID card for the severely disabled ("Schwerbehindertenausweis"). The information that follows is specific to Germany, but may be similar in other countries. This ID card grants special rights for people who have certain levels of disability. For example, severely disabled employees then have special job protection and are eligible for additional vacation time. These rights are meant to compensate for the health disadvantages they have.

Can I still drive if I have rheumatoid arthritis?

For many people who have rheumatoid arthritis, driving a car is important to help them stay independent and mobile. And it helps people to stay socially active, especially if they live in the countryside.

It's often still possible to drive a car even if you have rheumatoid arthritis. But over time, the symptoms may make it increasingly difficult to drive. There are many things that may be more and more of a problem, like taking a fast glimpse over your shoulder, steering safely, and shifting gears quickly or reacting to a dangerous situation in time. Some specialized modifications may be able to help, such as an additional mirror for people who aren't able to turn their head very well. It's also important that the step up into the car isn't too high. An automatic car can be easier to drive. In some cases it may be possible to adjust the car to make it more suitable for a disabled driver.

Many drivers also change their driving habits on the road. They make sure to avoid busier times of the day, like rush hour, and don't drive when they're having a "bad day." For people who have a severe walking disability, it can help to have their disability ID card marked with "special walking disability" ("außergewöhnliche Gehbehinderung"): This makes it possible to park in special handicapped parking spaces.

You may have to give up driving if the rheumatoid arthritis affects you so much that you don't know whether you can drive safely anymore. To make such a personal decision responsibly, it's important to be aware of your physical limitations and also be honest with yourself. If it's no longer possible for you to drive safely, you are endangering both your life and the lives of others.
If you're not sure whether you can still drive well enough, you can talk to your doctor about it. You can also go to the department of road traffic ("Straßenverkehrsamt") and have your ability to drive tested. Your health insurer may cover the costs.

How does rheumatoid arthritis affect how people see themselves?

Rheumatoid arthritis is relatively common in young women. The limitations it can cause come right at a time when most of their peers are in good health, and that can be hard to deal with.

Some women worry that they can't be a good mother or partner. Young women who have rheumatoid arthritis often wonder whether they should even have children. Having this disease doesn't mean that getting pregnant isn't an option. But it's important to keep in mind that not all of the rheumatoid arthritis medication can be taken before and during pregnancy or while breastfeeding. You can talk to a rheumatologist or gynecologist about this early on. Men who are trying for a baby with their partner also need to stop taking certain rheumatoid arthritis medications for a while.

Many people are concerned with their appearance and how attractive they are. Choosing shoes can be quite difficult when you have rheumatoid arthritis: A lot of fashionable shoes aren't an option because they don't fit right or you can't put special insoles in them. You might have to wear special orthopedic shoes if rheumatoid arthritis has changed your feet too much. Some people feel guilty about buying shoes they like, but that aren't suitable for insoles and will be bad for their feet. Changes in how your hands look can also be upsetting. People may avoid wearing certain items of clothing because they worry that others might see their rheumatoid arthritis. For instance, they may not wear shorts, skirts or dresses if their knees or ankles are affected. These kinds of limitations may make women feel less attractive and feminine.

Some people are concerned about loss of status if they have to give up their job or take on a different position. The pain and loss of strength can also affect how you see yourself. It can be hard to show weakness or accept help, especially for men. Quite a few people even try ignoring the condition as much as possible because it doesn't fit in with how they view themselves. They'd like to stay in control and continue living the life they're used to as much as possible. This can be physically and emotionally draining, though. It can sometimes lead to depressive thoughts, frustration and aggression.

But these sorts of feelings need not take over your life. Many people manage to change their personal goals or set new ones that they can reach, even with rheumatoid arthritis. Like with many chronic diseases, there are phases when things get better and then get worse again. In some phases the disease will be more dominant, while in others it will fade into the background. People whose rheumatoid arthritis affects their mental health can also seek psychological treatment.

How does rheumatoid arthritis affect relationships and sexuality?

Rheumatoid arthritis influences your everyday life and work, but it also affects your relationship and sexuality. The disease may have an impact on many different parts of a relationship, such as the roles you have, the division of chores in the household, mutual plans and what you can do together in your spare time.. Not going to parties or on trips together, or not participating in sports that you both enjoy, may lead to disappointment and make it harder to develop a feeling of togetherness.

Sometimes people with rheumatoid arthritis have the feeling that their partner doesn't show enough understanding for the situation they are in. Friends and family also need to first learn about what effects the disease has – and it may be hard for them to deal with too. It changes the lives of both partners. It's not always easy to see the other in pain, or to deal with more limitations and take on more responsibilities. It's important not to blame yourself or anyone else, because the disease and its effects are no one's "fault."

Some couples don't speak enough about their problems. But honest talks about stress, needs, worries and fears can be helpful to understand what the other person is going through. It might be better to come up with ideas together about changing habits, like planning fun activities spontaneously rather than far in advance, taking more breaks to rest when on trips, and reconsidering who takes care of which chores.

Painful joints, exhaustion and limited mobility can all affect your sex life. They can make sex difficult and sometimes even impossible. Vaginal dryness can be a problem, but it can be relieved with lubricants and creams.