Challenges of Living with an Invisible Illnessby Lene Andersen, MSW Patient Advocate
While some people with rheumatoid arthritis (RA) have evidence of visible illness, many of us do not. You cannot see the scars, both physical and emotional, or the swollen joints that we hide. Each day, our invisible illness creates challenges that we have to try to overcome. These are some of those challenges.
“Only old people have arthritis”
Most people associate arthritis with getting old. But osteoarthritis (OA) is a wear-and-tear form of arthritis that often happens as people age, or after an injury. RA, on the other hand, is an autoimmune disease that can affect anyone at any age. As well, RA doesn’t just affect the joints, but is a systemic disease that affects internal organs, such as the heart and kidneys, the vascular system, and other parts of the body.
“It’s all in your head”
Because RA can be invisible, even medical professionals can fall into the trap of disbelief, dismissing your concerns or not being able to diagnose the condition. This can lead to self-doubt for the person with RA, especially if you have pain, but little inflammation, or if you have seronegative RA, that is, if your condition does not show up in blood tests. For many with RA, this means that diagnosis takes longer and can result in irreversible damage to joints and other parts of the body.
Education is exhausting
Just as doctors can be skeptical because RA is an invisible illness, others in our lives can, as well. When others don’t believe we are sick, but see us taking time off school and work, taking the elevator instead of the stairs, and so on, they may say we are lazy. We are forced to defend ourselves and have to constantly educate other people, which can be exhausting. What is most frustrating is when we have to educate those who are close to us, who sometimes doubt us as much as, if not more than, strangers.
Fatigue is not just about being tired
Many of us with RA struggle with mind-numbing fatigue that we cannot fight against. When this fatigue hits, we have no choice but to succumb to it.
“I feel like I’ve been hit by a truck”
Not only is the joint pain, stiffness, and fatigue of RA invisible, but so too is the general feeling of being unwell that comes with RA. Many with RA feel like they are constantly under the weather, or constantly about to get sick. The proteins involved in the inflammatory response happening in RA essentially make you want to rest so you can get better. The problem is that RA is a chronic illness and resting may not make you feel better.
Pain is real but might not be constant
RA symptoms can ebb and flow, and is often characterized by flares, a sudden onset of disease activity that can be debilitating. Those of us with RA don’t know how we are going to feel one day to the next, which can contribute to anxiety and depression. The war against opioids has created an environment in which doctors are hesitant to provide painkillers and they can even be suspicious of people asking for help to control their pain. Having trouble getting your pain treated adds additional challenges to living with RA.
Many aspects of living with RA can be isolating. When you become unpredictable socially, canceling plans with friends or family at the last minute because of fatigue and/or pain, others may not understand. When cancelations happen repeatedly or we can’t participate in activities that we used to do, they may stop inviting us, causing us to become socially isolated.
RA disease activity can cause pain, making it hard to move. Some people with RA therefore need to get a disability parking permit, either on a temporary or permanent basis. When you use the permit and look like there’s nothing wrong with you, other people may not understand. That lack of understanding can lead to harassment and confrontations that can be very hurtful to the person who has a legitimate need for the permit.
If the RA is severe, it may affect your ability to work so much that you need to apply for disability benefits. Applying for Medicare is a convoluted and challenging process, which can be made more difficult if your condition is not visible. When you are physically unable to work, yet look well enough to do so, it’s especially important to involve a lawyer or advocate in the process to ensure that bias doesn’t mean you get rejected.
“You’re just fat”
Many with RA require steroids as part of our treatment. Side effects to these and other medications may cause weight gain. While our illness may be invisible, the way we look as a result of side effects of our treatment is visible to others, for instance, the so-called “moon face” that may be caused by steroids. People might mistake this for being overweight instead of sick and suggest that our illness would be cured if we just lost the weight.
To disclose or not to disclose
The invisibility of RA and lack of understanding can be isolating and creates an emotional burden when struggling with whether or not to disclose that we are sick. Those who have had negative experiences with this are less likely to disclose, causing a vicious cycle of hiding illness and feeling alone. Although there are legal guidelines around whether to disclose your illness at work, ultimately, you decide whether you want to tell others about your illness in your private life.