The Social Intricacies of Lyme Disease
At one point, two years into my illness, I went to my doctorís office to get one of my many blood draws. I was having a particularly rough day and was exhausted beyond belief. The nurse doing the blood draw (who I had gotten to know pretty well by that point) said, ďHey, how are you doing?Ē As I sat down in the chair rolling up my jacket sleeve, I quickly shrugged it off and dismissed it by saying the obligatory statement, ďIím fine.Ē She then stopped what she was doing, looked me straight in the eyes, and said, ďNo, youíre not. How are you really doing?Ē It caught me off guard. It was the first time someone had genuinely asked how I was holding up. It almost made me tear up because for the first time, she was giving me permission to not be OK.
She was giving me permission to stop hiding behind the facade and express what I was truly feeling.
In our society, we are taught to have a stiff upper lip and always act publicly like everything is OK even when it isnít, in order to be ďpoliteĒ and not burden others with any negativity or bring down a conversation. To actually admit to myself and to others that I wasnít doing OK was incredibly liberating.
Now, almost seven years into battling Lyme disease, Iím still discovering the many intricacies of this disease Ė including those in which social interactions are concerned.
When I talk to someone I havenít seen in a while, I notice I immediately become uncomfortable when those people ask what Iíve been up to. Knowing that I literally havenít been doing anything other than lying in bed, going to doctorís appointments, and honestly just trying to live day-to-day, I quickly steer the conversation elsewhere. Almost embarrassed that I donít have anything to show for my life for the last seven years Ė no career, no graduate school, etc.
Then there are the people who find out Iím sick and ask me, ďSo, what do you do all day?Ē These are people who are generally well-meaning, but just donít understand the struggle it takes just to survive with Lyme on a daily basis. They ask this question because they picture me bored just sitting at home (which to some extent they may be right), but what they donít realize is the toll normal activities during the day take on Lyme patients; activities that healthy people take for granted.
RESOURCES FROM LYMEDISEASE.ORG
hey donít see how I struggle to get ready in the morning. Planning out and taking my blood pressure medications about 30-60 minutes before even getting out of bed, so I donít pass out within a few minutes of standing. Then struggling to stand long enough to take a shower, out of breath and collapsing on my bed immediately after, before I can even muster enough strength to get dressed. They donít see me lying in bed during the day having seizures that make me feel like my brain is short circuiting. Or the anxiety and frustration that comes from the feeling that precipitates those seizures, because I know that I canít control them or stop them from happening. People donít see the constant pain that migrates throughout my body caused by my own body attacking itself. They donít see me lying awake all night with insomnia, only to have to get up in the morning and repeat the same cycle.
I donít blame people at all for not understanding, because how could you possibly understand the intricacies of this illness if you have never been through it? Your friends and family see you when you are feeling well enough to present yourself to the world in some way, whether that be going to lunch, watching a movie, etc. And therefore their perception of what Lyme is becomes based on those interactions with you. Because they simply do not see the rest.
Whenever I do mention my illness in social situations, other comments I get a lot are, ďWell, you donít look sick,Ē or, ďYouíre too young to be sick.Ē Again, people mean well when they say this and mean it as a compliment, but it can make me feel uneasy and hereís why: It doesnít validate how horrible Iím actually feeling. I may not ďlook sickĒ in the conventional way, but that doesnít mean Iím struggling any less. Many Lyme patients, including myself, just want their disease to be acknowledged. We fight with doctors, the Centers for Disease Control and Prevention and Infectious Diseases Society of America to get them to recognize chronic Lyme, the last thing we want is to have this fight with our family and friends as well. We just want the people closest to us to show some understanding and acknowledge what we are going through, as well as realize that battling a chronic illness is a labyrinth of complex emotions, and weíre all just trying to find our way through it.
So if you know or love someone with Lyme, realize that a little understanding and empathy goes a long way. If we tell you what we feel or what we are going through, please listen and validate those feelings. Keep inviting us to things even though most times we canít go, be a shoulder to cry on, and just try to be understanding of this horrendous disease. One day we will be well enough to rejoin you in venturing out into the world and doing the activities we once loved, but until then please be patient with us.
Dear RM Agents and Readers,
After reading story after story of so much loss by so many; I find it difficult if not impossible to believe this event is not purposely being sidelined and it is difficult to forgive those that have brought this forward.