Everyday life with rheumatoid arthritis

Photo of an elderly couple (PantherMedia / feverpitched)

Rheumatoid arthritis can cause pain and swelling in the joints and also lead to limited flexibility and loss of strength. General physical weakness, trouble sleeping and exhaustion are other common symptoms. All of these symptoms can greatly impact general wellbeing and performance at work.

And living with rheumatoid arthritis isn't always easy, 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 like they have really fallen down into a deep dark hole. This can be compounded by anxieties about the future because it's so difficult to predict how the condition might develop in one particular person. But different treatments can slow or stop the condition from getting worse.

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 and yard work can become a challenge over time, as can other leisure time activities. There are a number of different support aids that can help make it easier. Also, over time many people develop strategies to better deal with these kinds of everyday activities. For example: When you do laundry, you don't necessarily need to hang up the entire load all at once. You could start with heavier items and then finish the rest later on.

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

How can rheumatoid arthritis affect your job?

Work is an important part of life for many people, aside from the basic need to earn money. Provided that you're somewhat satisfied with your working environment, a job is often felt to be part of finding meaning in life and helpful for self-confidence. In addition to financial independence, the social environment at work is also very important.

Continuing to do their job can help also help distract people from the condition's symptoms and help show them that not everything in their life need revolve around their disease. Some people who have rheumatoid arthritis even report that their job has become more important to them since having the condition, and that they'd rather make concessions to their leisure activities than give up their work.

If the disease does affect your work, it may be helpful to talk with your coworkers or superior. Your employer may be able to offer you some forms of support, such as modifying your workplace or adjusting your break times or deadlines for certain tasks. If it becomes necessary to redesign your workplace, your pension may cover the costs in some circumstances.

People who have more severe limitations due to rheumatoid arthritis may be eligible for a severely disabled ID card. The information that follows related to this ID card is specific to Germany, but may be similar in other countries. This ID card grants specific rights to people who have a disability beyond a certain minimum level of severity. 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 remains a major part of the lives. It can give them the feeling of continued independence and mobility. And it helps people to stay socially active, especially if they live in the countryside.

Many people can continue to drive even with 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. An automatic car can be easier to drive too. It's also important that the step up into the car isn't too high. In some cases it may be possible to reconfigure 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 are severely disabled from walking it can help to have a severely disabled ID card that is marked with "extraordinary walking disability": This makes it possible to park in special handicapped parking spaces.

It may be necessary to give up driving if the limitations become so severe that it's no longer possible to ensure that the car can be steered safely. To make such a personal decision responsibly, it's critical that you're acutely aware of your physical limitations and 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.

You can talk with your doctor if you're unsure whether you can still drive well enough. You can also go to the department for road traffic and have your ability to drive tested. Your health insurer may cover the costs.

How does rheumatoid arthritis affect how people see themselves?

Young women develop rheumatoid arthritis relatively often. The limitations it can cause come right at a time when most of their peers are in good health and able to withstand physical stress.

Some mothers are afraid that they might not be able to attend to the needs of their children or their partner. Young women who have rheumatoid arthritis often wonder whether they should even have children, but it's not a reason to forgo pregnancy. It's important to keep in mind, though, that not all of the rheumatoid arthritis medication can be taken before and during pregnancy. So it's a good idea to try to get pregnant during a period when the symptoms are milder. Going to a gynecologist or a rheumatoid arthritis specialist for advice in advance can also be helpful. Men who are trying for a pregnancy also need to stop taking some rheumatoid arthritis medication for a while.

Many women are concerned with their appearance and how attractive they are. Choosing the right shoes can be quite difficult: Most of the more fashionable shoes are not an option since it may be harder to make them fit right or put in special insoles. Orthopedic shoes may be needed if your feet have undergone too much change. Some women feel guilty about buying shoes they like, but that aren't suitable for insoles and will be bad for their feet. They may also avoid wearing certain items of clothing like skirts because it could reveal that they have rheumatoid arthritis if their knees or feet are affected. Some may also worry about the appearance of their hands if they're affected. These kinds of limitations may make women feel less attractive and feminine.

Pain and loss of strength can also affect how men see themselves. They often have a difficult time showing weakness or accepting help. Some are concerned about loss of status if they have to give up their job or take on a different position. Quite a few men may 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. But this can be physically and emotionally draining. This kind of behavior can lead to depressive thoughts, frustration and aggression.

But these sorts of feelings need not gain the upper hand. Many people succeed in adjusting their individual goals or setting new ones that they can reach even with rheumatoid arthritis. As is the case with many chronic diseases, there will be phases when things get better and then get worse again. In some phases the condition will be more dominant, while in others it will recede into the background. People who have severe emotional distress as a result of their rheumatoid arthritis may 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 condition may have an impact on many different parts of a relationship, and influence the roles each person assumes, the division of chores in the household, mutual plans and leisure activities. Forgoing parties and trips, or not participating in sports that you both enjoy may lead to disappointment and difficulties developing 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 the condition will entail – and it may be a burden for them 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 condition and its effects are no one's "fault."

Some couples don't speak enough about their problems. But honest discussions 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 doing more short-term planning for leisure activities, taking more breaks on trips and reconsidering who takes care of which chores.

Painful joints, exhaustion and limited flexibility can all impact sexuality. They can make sex difficult and sometimes even impossible. Vaginal dryness is one problem that can be relieved with lubricants and creams.

The condition can also change how you feel about your body. This may affect the core areas of femininity or masculinity. So it's not uncommon for sexual desire to subside as the disease progresses. Some people feel increasingly unattractive and may avoid sex.

Even if they don't have the energy or feel any desire for sexuality, physical contact and tenderness are usually important and pleasant for most people. This can help couples to still feel intimate and close.