Communicating With A Lymie – Do’s and Don’ts

Disclaimer: I do a disclaimer when I am about to say things that may come across the wrong way. This is not directed at anyone specifically – it’s really just general thoughts I’ve had over the last few years and now see happening to others as well. I am hoping that what I write here will help people be more sympathetic towards lyme patients. Well-meaning people often say things to lymies that feel disrespectful and sometimes hurtful. We know you care, so we try not to take it personally, but in all honesty, it becomes very difficult to be around people who don’t understand lyme disease because of the comments they make – we may even try to avoid bumping into you in the grocery store just so we don’t have to hear it. So as you read this, please know that I in no way mean it to be offensive…on the contrary, I hope it will be a helpful tool for you to communicate with your lymie and perhaps even share in their journey.

Lyme Disease is not the flu. Lyme Disease is not pneumonia. It’s not a bad headache. It’s not arthritic aches and pains. It’s not fatigue after an exhausting day. While all of these may weave in and out of the illness – you cannot compare any of these to Lyme Disease. If you haven’t had it, it’s not like anything you have ever experienced. Telling your lymie you understand one of their symptoms because you’ve had something you think is similar really only sends the message that you don’t understand. They don’t want to be unsympathetic to your suffering – it just really is not the same.

Lymies appreciate that you care enough to want to help them, but your advice of things that helped you are not going to cure them and will most likely not alleviate the pain the way it has with you. Lymies have done a ton of research and have become an expert in the illness. There is nothing you can advise that they haven’t already thought of and most likely either tried or have learned that it is not a good option for a lyme patient.

On that note, if you have done some research on Lyme, thank you – we want you to know more about it! And we want to be able to discuss it with you. But absolutely nothing you have read or heard makes you more knowledgeable about the disease and treatment options than a patient with lyme disease. As I mentioned above, they have done the research. Much more so than you ever will. Not to mention that they live with the illness 24/7/365. So when you do talk with them about what you have read, don’t try to “teach” your lymie, be prepared to learn a little more than what you think you know.

Lyme disease is not just an illness – it is a political battle. A person with Lyme has usually seen many doctors and is fully aware that they have not received the good care we expect from the medical community. Lyme patients have taken matters into their own hands and are doing everything they can to work towards getting well. In the meantime, they are fighting insurance and the local medical community to try and get the help they need. If you are just learning that lyme is politically charged, please do not harp on the lymie about what doctors should or shouldn’t do…believe me – they already know. Take the time to learn about it, go to lymedisease.org and comb thru the vast information available there and then sit down with your lymie to discuss the issues. If you don’t have the time to learn about it, please, keep your opinions to yourself and just show a little compassion toward the patient who has been fighting for help.

All that said it might seem that we don’t want to talk about Lyme. But oh we do! When we do all that research, we learn so much. And we want to tell the entire world about it! We are shocked by not only the dynamics of the disease, but also what is going on with the CDC, the IDSA and the medical community. And we think everyone else would crave this knowledge. We quickly learn that while people are sympathetic to what we’re going thru, most people are focused on what’s going on in their own lives. And since they’re not directly affected by this disease or the politics surrounding it, they really don’t have the attention span to sit thru a lengthy (and it will be lengthy) lyme disease discussion.

When I started this post, I really was going to keep it to a short one or two paragraphs. Well, I guess I had more to say than I thought. But I’m out of words and my head hurts so I’ll leave you with this final thought: Lyme Disease is the fastest grown vector-borne disease in the US and is in every state; the medical community is not dealing with it well enough; and you have a lyme expert at your fingertips who is an excellent resource to help you learn about the disease, how to prevent it, how to identify it, and what to do if you get it.

God is still God.
God is still good.
To Him be the glory.

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7 thoughts on “Communicating With A Lymie – Do’s and Don’ts

  1. I appreciate what you wrote and if I have been insensitive to you I apologize. I will admit that I didn’t know squat about it but would love to learn about it from you! Love you girlfriend!!!!

    Liked by 1 person

    • not at all my dear friend! I really don’t want anyone to take it personally – it’s a generalization and has more to do about recent comments other Lymies have received. I love you my dearheart!

      Like

  2. Thank you…. I’m on day 11 of my 90 day treatment plan… It hit me hard yesterday and today. I’m hoping that means it’s working! Best wishes to all of us who are trying to recover from this ridiculous disease…. I honestly feel like brighter days are ahead!!!

    Like

  3. Thank you soooo much, it perfectly summed up my experience with peoples reaction to my disease. I am the kind of person that when I broke my leg in 14 places and wore a whole leg cast quickly made a insulated boot to cover my foot so I could return to my fencing of the farm over the winter. I never slacked up. and now it seems as if everyone thinks , I’m getting around , it aint that bad and compares there fatigue.

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    • I am late stage too – it is so frustrating dealing with the illness and then having to deal with people who don’t understand makes it so difficult.

      I’m so happy this post has reached so many people – I truly hope people who do not have Lyme are able to understand a little better.

      Like

  4. Pingback: Things I, as a mother, need the other people sometimes responsible for my child, to understand. | The Lyme Bean Chronicles

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