Actually, I’ve learned many people need a little help from me to truly see the pain.
Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.
My own reasons include:
- I don’t want those around me to worry.
- Pride.
- I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
- I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.
But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.
Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.
Here are some tips to try out:
- Plainly state the less-than-obvious. When someone says, “You look great today” and you are feeling horrid, you can be honest without being a whiner. Say cheerfully, “Well, half isn’t bad, but it’s a shame I’m not feeling great!” Then move on to other subjects.
- Offer a visual clue. If you use a cane or have a handicap tag, consider displaying them even on your less awful days to let others know you’re not feeling 100 percent.
- Describe your limits in terms someone can visualize. Ask people in your life to read my post explaining how it feels like having a gas tank low on fuel. Or another writer’s clever description using teaspoons as a measure to explain how it feels to suffer with lupus – we’re all in the same low-energy boat.
- When someone asks how you are, don’t offer the polite falsehood “Fine.” Use a scale of 1-10 for a quick but clear answer. Explain that 1 is normal, 10 means unbearable. I find I don’t need to give people the entire symptom list of the day—it’s enough that they understand I’m at 8 while they are feeling super at 1.
- Don’t hide out on all of your bad days. If someone close to you wants to visit on one of your worst days, maybe even a bad herx day, let them—if only for a short while. If they only see you on better days, they’ll won’t fully understand.
There must be plenty more I’m not thinking of. So please share tips you’ve discovered below.
Friends and family: Click here to read “Six Common Misconceptions About the Chronically Ill” in Psychology Today.
Tagged: 5 things, chronic fatigue, family, fatigue, friends, herxing, invisible illness, lupus, lyme disease, pain, symptoms, tips, tired
LifeLoveLyme 
I refuse to look how bad I feel most days because I then feel like this disease has taken that from me too. I refuse to give in to this disease. Before getting Lyme, I did my hair everyday, now I wash it every 2 even 3 days because doing my hair just takes too much energy from me. I always put a little make up on too because I refuse to let this disease take every part of me. I used to dress up everyday for work and wear heels, etc. I still want to feel good about myself. People think because you’re sick you have to look sick. I would’ve been wearing flannels and a sweatshirt for the last three years! I need to believe that I will beat this disease one day!
I hear you—I know what it takes to put on that makeup every day, and I can’t wash my hair daily, either. You make a good point about putting the best face forward, that we can’t let lyme take away our positive sense of self. At the same time, we need ways to educate people so there’s more awareness, more prevention, and more research. Not to mention more support for us personally from those around us. Other ways to make lyme visible include things like writing letters to the editor, supporting groups that advocate for lyme, or telling friends and family the facts and how to protect themselves. Take heart, I hope you are better soon.
Wow, every day I find how I am not alone – I have such guilt about not “taking care” of myself when it is really an issue of energy and pain. Thank you for that. I also am not nauseated and I still can eat like a horse. Because I also have a sense of humor for real and sometimes to cover up, it doesn’t always appear that I am not doing well.
We need to ditch the guilt — our #1 job is taking care of ourselves. That job is so much easier if we can get those around us to understand a little better. And if we can be in touch with others who remind us we are not alone.:)
I find that if I am having a bad fog day and everytime I talk to someone and it takes me 30 seconds to get out one word I feel so stupid and the looks they give me on top of that is even worse. Once I get home from dealing with the public I just tell my family how it felt to have so many strangers look at me that way and all they can do is encourage me and tell me that I’m not! This is the hardest part of this disease to get through and even with all the treatment I have had it just won’t go away. How can you explain this to people around you ??
I’ve felt that way. Now when I have brain fog I try to be up front and say, “Sorry, I have lyme disease, an infection that affects how my brain works. Give me a minute to find the right words.” I find the reaction is one of curiosity rather than impatience. Of course, that’s hard to do in some situations. That’s when family support comes in, as you say.
I am in tears reading these comments. The guilt is bad for me. Almost as bad as the pain, exhaustion and fog. But to read the words of others going thru this, brings this all to the surface in a crying wave of relief. Not that i would ever wish this on anyone. But nobody understands like someone else with lyme. I am currently sitting in my car (going on 15 minutes now) waiting to muster the energy to walk up the two flights to my apt, with 4 relatively light grocery bags. I hate this!!
You’re right, no one can understand lyme the way we do. That’s why we need to connect somehow, some way, with others on the same journey. And that’s why I’m here empathizing and cheering you on—as will others who read your comment.
Reading your comments makes me feel somewhat better. May days I feel very alone fighting this disease. Like you all have said “No one understands like someone else with lyme”. Thank you all for your posts.
You truly have a wonderful blog. Thanks for your wise words and compassion.
“I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.” Yes this is the biggest one for me. My boyfriend actually had a good idea in which he just told me to complain all I wanted, but to put forth a corresponding amount of positive thoughts also (like, “those flowers look so wonderful in the sun over there” or what the h3ll ever). I have found that this exercise really does help me learn to be more positive–but I still do complain when the body flares up!!!
I’m loving that idea and will start using it today!
my wife rarely complains although i see it on her expressions this truly is an awful way to live for anyone who has this disease-the change in seasons is really messing her up i feel so helpless to it i want to cry -but alas im always here for her she is my love my life my enduring light and i love her with all my might -she is my most rarest treasure-I LOVE YOU STACY
Change of season does make a difference, but spring and warm weather are a comfort to most of us and just around the corner, so take heart. She’s lucky to have a husband like you; I’ll be posting a blog about caregivers and their special challenges that I hope is helpful; meantime, take good care of YOU.