Once upon a time, in the dark forests of eastern Europe, there was a creature that changed its victims into wolves. Not really, but there is a disease that gave people red lesions on their faces and reminded a thirteenth-century physician of a wolf’s bite. In the seventeenth century, the same rash would be described as a butterfly spreading across the face. But the name “lupus” (Latin for “wolf”) stuck.
Those who have known me for a while know I’ve been dealing with chronic joint pain, rashes, unexplained fevers, and fatigue. After seeing half a dozen doctors, multiple blood tests and examinations, I have a diagnosis – lupus.
Lupus is a chronic autoimmune disease that can damage any part of the body, including skin, joints and/or organs. Some of the symptoms include:
- Extreme fatigue (tiredness)
- Painful or swollen joints
- Butterfly-shaped rash across cheeks and nose
- Sun- or light sensitivity (photosensitivity)
It isn’t contagious; you can’t “catch” lupus. And it isn’t like cancer that can be treated with surgery and/or chemotherapy.
It doesn’t go away, but it can be managed with diet, exercise, and medication. It’s not going to kill me nor stop me from writing, traveling, or drinking tea.
For more information, go to the Lupus Foundation of America.
I’m not going to share with you a litany of my symptoms and treatment, what I am going to share are things friends have said trying to be helpful. I know it’s easy to mean well and say the wrong thing. We often blurt out the first thing that comes to mind or speak without thinking. Over the past five years, if I had a nickel for every time someone said something unhelpful to me, I could have a night out at the Cicada Club.
Here are just a few:
- You don’t look sick. Not all illnesses manifest themselves outwardly. I’ve become adept at “pulling it together” and not showing pain and fatigue.
- You look good, did you lose weight? Illness can take a toll on a body and medication can cause weight loss or gain. Don’t go there; trust me, it’s best not to even mention weight.
- Have you tried (insert name of drug or herb)? It really helped by sister’s friend’s gardener. You are not a doctor, don’t give medical advice. ‘Nuff said.
Here a few things I find supportive:
- Ask me questions about lupus. It’s okay to talk about it, really. It shows you are interested and want to understand.
- Ask, How are you, today? Every day is different, some better than others.
- Empathy and validation go a long way. I know it’s hard to know what to say but just saying, “That must be frustrating.” Or “It’s okay, I understand you don’t feel up to it. We’ll reschedule.”
What if you’ve already said something unhelpful? That’s okay. Take a deep breath, apologize, and start over. You’ll be forgiven, after all, we are all just trying to do the best we can.
As for me, this just means I’m traveling down a different road than I had planned. This one will have more bumps, hills, and curves, but I’ll just put one foot in front of the other and see where it leads.
Until next time . . . The door is alway open, and the kettle is always on.