What It’s Like Living With Rheumatoid Arthritis for a Decade


10 Years With RA: What’s the Impact?

10 Years With RAI am going on ten years with rheumatoid arthritis (RA), which is just over a fourth of my life.

During these ten years, I have completed a master’s degree, became a chronic illness advocate, wrote and had published over 300 health articles and so much more. But not everything that has happened has been good, and there have indeed been plenty of trials due to RA’s effects.

There have been far too many moments where giving up felt like the only option, and there will be many more. All that joint pain and inflammation can take on a life of its own and complicate any sense of normalcy.

How Rheumatoid Arthritis Has Impacted My Life

Here are six ways in which RA has affected my life over the last ten years, and how it might affect yours.

1. Chronic Inflammation

RA is an autoimmune disease where your immune systems attacks the lining of your joints, but RA’s effects aren’t just limited to your joints. The inflammation also affects the organs, including your heart, lungs, skin, and eyes.

My levels of pain and fatigue have varied in the past 10 years. I have had periods where my symptoms have been mild, and periods of debilitating flares, and I have not experienced drug remission.

According to the Arthritis Foundation, your RA is in remission when you have:

  • One or few swollen joints.
  • One or few tender joints.
  • Joint inflammation of one or less on an arthritis scale of 1 to 10.
  • Blood markers showing little or no inflammation.

I am fortunate to experience more good days than bad, but even on good days, I still experience pain, especially in the morning, and when I lay down at night. I also struggle with eye and gum inflammation, dry and irritated skin, fatigue and gastrointestinal symptoms.

2. Taking Care of Yourself

Your doctor considers RA successfully managed when you need to make few or no changes. But it is common for joints to feel painful and stiff in the morning, even if your RA is managed or you have mild to moderate RA.

Everyday tasks, such as laundry, cleaning, cooking, and yard work become challenging with time, as they have for me. Support aids and creativity can help you care of yourself, your family, and home easier. Simple things may include:

  • Wearing comfortable and easy to put on shoes.
  • Using kitchen gadgets, such as electric can openers, that put less pressure on hands, wrists, and fingers.
  • Having an RA-friendly computer station – whether at home or work – that includes the right chair, keyboard, or mouse, can make life with RA less painful.

Most of us with RA want to manage everyday life on our own and despite our symptoms, or don’t have a lot of support and help. But if you are lucky enough to have friends and family who are supportive, ask for help and do not push them away, as their support and assistance are vital to managing RA.

3. Continuing to Work

Work is important for people with RA and not just because they need to earn money. Jobs offer self-confidence, financial independence, and socialization opportunities.

Continuing to work has been a great way to distract from my disease and remove financial worries. Most people with RA would rather be working, but unfortunately, severe limitations have made it impossible for them.

If you want to keep working and are finding RA affects your ability to be productive, it might be helpful to talk to your employer. The Americans with Disabilities Act (ADA) of 1990 requires an employer to provide “reasonable accommodations” to people with RA.

Reasonable accommodations must not cause undue hardship to the employer. Accommodations may include an RA friendly workstation or adjusting break times, work schedules, and deadlines to help individuals perform their jobs as productively as others without RA.

Next page: Three more ways RA impacts one’s life. 

4. Driving

Continuing to drive will help you to continue to feel independent and mobile and stay socially active. While most of us continue to drive with RA – even after ten years, symptoms of RA can make it difficult.

Looking over your shoulder, steering safely, changing gears and reaction times can all be affected by RA. Some modifications to your car may help, such as an additional mirror if you are not able to turn your head and neck well, stepping into a car that isn’t too high, or driving an automatic car.

If you are severely disabled and struggle when walking, you might consider getting a handicap placard through your state’s Department of Motor Vehicles. This way you can park in special accessible parking spaces, and not have to walk too far to get to your destination.

5. Perception of Yourself

Young women have the highest risk for developing RA. What’s worse is it comes at a time when others of the same age are in good health and able to handle physical life stresses.

I was in my early 30s when I was diagnosed, and my biggest fear was not being able to meet the needs of my children. Moreover, RA made me decide not to have any more children.

RA has made a lot of young women forgo having children, and while you can still have children with RA, but there are too much planning and precaution most decide it is too much. And men with RA have similar obstacles as they also must give up taking RA medications when planning to start a family.

There is also the concern about appearance especially in women because something as simple as finding comfortable shoes means picking out the most unattractive. Or many worry about the appearance of their hands because RA isn’t always kind to the hands and fingers.

Men, on the other hand, feel pain and loss of strength affect how they perceive themselves. And asking for help and showing weakness can be difficult.

The feelings associated with RA can be draining and lead to depression, frustration, and anger.

Living with RA takes its toll on your emotional health, but despite everything, I know I am lucky to still respond well to RA medications. The hardest part, however, is not knowing what the future with this disease holds, and the effect it will have on me in five or ten more years.

6. Relationships and Sexuality

RA affects many aspects of personal relationships, including the roles each person has, the division of responsibilities, and life’s plans. These changes can lead to disappointment and feelings of resentment.

People with RA may feel their romantic partners don’t show enough understanding. Sometimes, partners won’t even talk about the effect of RA, but honest discussions about stress, responsibilities, needs, and worries are vital to minimizing the impacts RA has on the relationships.

A 2009 study reported in the journal Cancer finds men are six more times more likely to leave a seriously ill partner. And the divorce rate for seriously ill women is 21% and 3% for seriously ill men.

The symptoms of RA, including painful and limited joints and fatigue, can also impact sexual intimacy, and even make having sex difficult or even impossible. Just like anyone, people with RA need physical contact, sexuality, and intimacy, and is, therefore, important to address RA issues affecting romantic relationships.

RA’s Effects

My RA diagnosis has affected my life in ways small and big. But I have been blessed, and I view RA’s impact far beyond the physical aspects.

I understand everyone’s experience with RA is different. For some of you, it’s a lot harder, and for others, RA has been a little kinder, but we are affected, and each of us has decided what we will make of this experience.

Resources

Arthritis Foundation (Remission! Now What?)

New York Times (Divorce Risk Higher When Wife Gets Sick)

Cancer (Gender disparity in the rate of partner abandonment in patients with serious medical illness)

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