A Lyme Chick’s Perspective on Friendships

I have often wished that I had a spiel or speech memorized to spew at people about my daily life with Lyme and all that it entails.  A quick summary I could give them that could hopefully get them not only to understand, but also serve as a subtle way of warning them that friendships and relationships with people with Lyme can be trying and difficult on both ends.

For us, all we want is empathy and compassion. We want to be cut some slack in advance for the inevitable ways in which we’ll unwittingly let you down. We want you to understand that not calling or emailing back wasn’t a dig, it was because we couldn’t get out from underneath the covers. We want you to understand that ‘looking good’ is in no way equivalent to feeling good, nor is forgetfulness equivalent to not caring. I could elaborate, as could all Lyme Chicks (and we did) but the one side I admittedly never gave much thought to was how hard it could be on the friend, or boyfriend, or girlfriend, or parent of someone with Lyme…

That was the thought that sparked this video.

This is dedicated to the friends and family of all us Lyme Chicks, the people that have so graciously taken on the confusing and mystifying universe of Lyme disease with us. The ones who stood by us and attempted to understand what we couldn’t even begin to explain. This is for everyone who’s been left confused and hurt or completely baffled as to how to be a friend to someone with Lyme. This is for everyone who’s put in the effort. Thank you.

Thoughts from other Lyme Chicks

“Expect a strong willed person who through the tears and suffering always pulls through. Expect to want to do everything for her, but also rest easy in the fact that she would rather do things herself. Expect someone you would be very proud of.”  – Strep Thrd Degree

“Expect a friend who may still seem normal at times but may seem totally strange at other times; a friend who is hurting, more than words can describe; a friend who wants to still be there for you and do regular things but who may be limited in doing so at times; a friend who is having to work really hard just to do the simple things like get up out of bed in the morning; Sometimes people are afraid to talk about Lyme and sometimes people don’t know how to talk about anyone else. Expect that your friend is going to have ups and downs, good times and bad times, that one doesn’t just ‘get over the Lyme’ – it’s a whole long awful process. Expect that it may be tough to be her friend at times but that she needs you very much.” – Melinda McNamara Kassing

About Lyme Chick

Lyme Disease advocate/warrior still learning about Lyme treatments/recovery and wishing to inform, support, and commiserate with others along the way.
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11 Responses to A Lyme Chick’s Perspective on Friendships

  1. Well said…you couldn’t have shared this any better! Thank you

  2. emily says:

    this is the most accurate thing ever!

  3. Megan says:

    I feel like someone finally took the words out of my brain… Thank you!

  4. melissa says:

    Perfectly said 🙂

  5. Wonderfully put. I feel this way so many times. Mostly when it comes to my children and grandchildren. I miss so much that I would never have missed pre-Lyme.
    Thank you for putting this into words.

  6. Jennifer says:

    Very well said, Lyme Chick. That was right on the money! I am also tired of hearing people tell me “you certainly don’t look sick”. I’ve always been a very independent person and have always kept people at arm’s length, but lyme disease has made that even more so. That being said, I really value the friends that I have who truly understand. I work for the Forest Service, so my co-workers generally understand and are aware of lyme disease (lyme disease is prevalent among Forest Service employees). So that helps to make things a bit easier for me too. Keep up the good work, Lyme Chick!

  7. Karen says:

    Jennifer,

    I’m a forester by training though I’ve not worked in that field in a long time. I have to say, of all the people I’ve told about my diagnosis, the folks in the FS have been the most supportive and understanding. One friend I hadn’t seen in about 4 years because of the distance and my increasing inability to participate in life, responded the day following the message I sent letting them know I had Lyme, that if I needed him to let him know and he would be here in two days. He would need one day to make arrangements for his daughter’s daycare and a day to drive. I was so touched I cried. I had sent the message to his wife who used to be my backpacking partner out of concern that she may have been exposed as well since we hung out so much. I wish everyone understood Lyme as well as the FS folks but I don’t wish it on the people they know. Those thoughtful gestures and sweet moments get me through the bad days.

  8. Alex Lyme says:

    Great insights sweetie 😉

    I am sick and tired of faking the entire illness in almost every situation (especially when I have a bad relapse) it’s just hard to even fake it anymore. I too notice that most people are NOT into listening about your illness and that you’re suffering, and most of them don’t even believe you and give you weird looks – why? Simply because they just don’t get it when you don’t necessarily look sick.

    I’m with you on that one too (I shouldn’t be around people if I can’t be honest about how I feel) I too suffer from anxiety and had to isolate myself most of the time and start earning money from home which isn’t an easy task when you have Lyme (staying on the computer 8 hours a day is just insane when you have terrible headaches on daily basis) … heck even my fingers hurt as I’m typing this message.

    I would really like to get in touch with you and chat some time, if you’re open for a discussion –

    Sincerely
    Alex
    br0_al3x@yahoo.com

  9. Margaret Meginley says:

    I have family and “friends” that try to tell me if I would just get out of the house or get some excercise, I would feel so much better….wrong! Then, I would have to spend two day recovering from that! And the confusion is the absolute worst…can’t spell, can’t type(without corecting it over and over), can’t read and comprehend anything, can’t remember the simplest things that I knew before or that I was just told yesterday.

  10. big sigh… deep breath… Not one person I know knows what to say to me.. when all they have to do is give me a hug. Not one person I know asks me to go out to do anything any more. like Im already dead. when all they have to do is email me Hi, thinking about you…. a short, sweet email to make me feel like Im still part of their life. Not one person I know has come to visit, bring a card, a bowl of chicken soup,,,As if I dont really have anything wrong with me. Not one person I know has asked me what I think about this disease and its treatments. They all want to know why I havent see this doctor, tried this treatment, or eaten this food, or taken this supplement or gone to this hospital.. Not one person I know is left… as a true friend. they have died off like Im wishing my disease would. Im stll here, surrounded by the empty shells of friendships that didnt survive the disease. ready to be swept away, yet I cant get up to do that.. because once the shells are gone, I will truly be alone.

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