Rheumatoid disease (arthritis) has a secret symptom. It’s one that’s never mentioned by doctors or in medical texts in books or on the Internet, but it ought to be. In fact, I think doctors should be compelled to talk about it with their patients. It should be listed right up there along with pain, fatigue, and malaise. It should be right there, right out in the open.
What is RD’s secret symptom? It’s fear–and everyone who has RD copes with it almost daily. We do it alone and we do it without support.
There are a lot of things to fear when you’ve been diagnosed with RD. Fear of pain tops the list. Once you’ve experienced your personal version of an eight on the ubiquitous doctor’s office pain scale (zero being no pain, and 10 being the worst pain you’ve ever felt), you can’t help but dread the thought of ever hitting that agonizing, excruciating level again. And surpassing it? OMG. Each new flare ratchets up the fear again. But no one mentions it. Not you, not your doctor, not your friends or relatives.
Then there’s the fear of disability, both the current version and the disability you might face in the amorphous but oncoming future. RD pain can make us limp and gimp. We sometimes need to use a cane, or crutches, or a wheelchair, or wear splints or braces. These devices are just useful tools, like sunglasses and shoes. They make living and getting around easier for us and allow us to live as normally as possible. But sadly, in today’s world, they come with a stigma. Somehow, people with disabilities are “other.” They’re seen as sick, as less than equal, even as contagious. It’s cruel and unreasonable, and makes life much harder for those who have to bear it.
Disability can make daily living difficult. Sometimes it’s hard to do simple things, like twist a lid off a jar or get dressed by ourselves. If RD attacks our temporomandibular joint–the joint that hinges the jaw to the skull–we might have a hard time opening our mouths to eat or even to speak. Disability like that can make us miss work, cancel outings with friends, and even just prevent us from getting out of the house for a while. Is there any wonder that disability–large or small–makes us afraid?
And if that’s not enough, we also fear failing others because of the pain and disability our RD causes. If we’re in a relationship, or married, we might not be able to do our half of the daily household chores, or maybe we can’t manage the yardwork. Pain or disability–or both–might interfere with intimacy when the lights go out at night. As parents, we might not be able to play with our kids like we think we should. We might need help with them that other young moms or dads don’t need. And as employees, pain and disability might interfere with our work. We might not be able to do the tasks we’ve been hired to do, or be as punctual as we should be, or even make it to work every day. These things–and many more–make up the fear that RD patients experience along with pain, disability, and fatigue. It’s the secret symptom, and it can be devastating.
The fear-symptom is real, and it’s perfectly normal. Who wouldn’t be afraid, faced with the challenges the average person with rheumatoid disease faces every day? But fear can be controlled. Remember that the fear of something is usually far worse than the thing itself. The way to beat it is to live one day at a time. Don’t hide from the future, but don’t dwell on it. It hasn’t happened yet. Instead, be open and honest with yourself and others about your limitations–and about everything you can do, too, because there’s far more of it. Learn everything you can about your RD and be assertive about your medical treatment. Live positively by treating yourself well, eating healthy, nutritious foods and exercising your body to keep it strong. Forgive yourself when you fall short. Failure is a necessary stepping stone to success, after all.
Having RD can be scary. It’s a real challenge, but you have all the strength and courage you need, right there, ready to tap into. Remember to smile, laugh, enjoy the beauty of the world around you and be open to the small gifts it has to offer each and every day. Surprise yourself.
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
–ELEANOR ROOSEVELT, 1884-1962