I know that people generally say things out of love and that comments made about lyme disease are not intended to be hurtful, but sometimes words intended in love can bring heartache and make a person feel so alone and misunderstood. I have heard from other lymies that they too have been crushed by similar well-intended words, and I feel compelled to share a few statements that hurt us and why they do.
I am not trying to chastise anyone for having said these things to me or someone else. I simply want to help others understand how certain phrases may be hurtful and offer suggestions to help encourage a lymie (or other chronic sufferer) with words that are uplifting and supportive.
Things NOT to say to a lymie…
1.) “Well at least it’s not cancer.” You’re right, it’s not cancer. And while we praise God for that, Lyme Disease has a horrific impact on our lives and tears down our entire world. Simply say “I’m sorry to hear that.”
2.) “Oh good, it could have been something much worse!” LD is a very debilitating disease that is accompanied by a great deal of pain and suffering that often takes many years to recover. You can say something like “I can’t imagine how hard that must be.”
3. “So happy it’s curable.” Sometimes LD is in-curable. Unfortunately, we don’t know until we have been thru several years of treatment. And in the meantime, we are still suffering so much. A better thing to say is “I’m so happy you are finally able to move forward with treatment.”
4.) “I’m so glad you are feeling well.” or “You look like you are feeling well.” Just because you see a lymie out of the house and smiling doesn’t mean they are feeling well. I can honestly say that I have not been able to say “I am feeling well” in a very long time. A lymie’s best day is still pretty bad. We learn to smile behind the pain. We learn to manage the nausea, the weakness and about 80 other symptoms. Be we get sick and tired of being home all the time – so when we are “not horrible”, we do what we can to get out of the house. It has probably taken hours to get ready, it has probably taken more energy than we actually have, it’s a big deal for us to be up and about. So please don’t take our presence to mean that we feel well. Just tell us you are happy to see us. Because without a doubt, we are happy to see you.
5.) “Hopefully the treatment will get you better soon.” We lymies hope so too. But that’s not realistic. LD can take years to treat – and in the meantime, we are very sick. Traditional LD treatment includes multiple types of antibiotics in very high doses over a very long period of time. Antibiotics kill bacteria – bad and good both. This makes a person feel even sicker. How about saying something like “I’m sorry you have to go through all this.”
6.) “Why did it take so long to diagnose? Couldn’t they just order a blood test?” Lyme and tick borne diseases are highly controversial. This is a long and difficult subject to explain. The bottom line is that current testing is unreliable and most doctors do not well understand LD. Simply say that you are happy there is finally a diagnosis.
7.) “You should try _______.” Whether your advice has to do with supplements, diet, exercise, alternative medicine, traditional medicine, or anything else, chances are that we have done a lot more research on LD than you. We work with specifically chosen doctors to develop a treatment plan that is right for our specific case. No 2 lyme cases are the same. There are a multitude of factors that impact our bodies in specific ways. In addition to the basic lyme bacteria, there are several co-infections and other impacts that will dictate how the disease affects the body and what treatment is needed. For example: in addition to basic lyme disease, I have at least 2 co-infections, 3 viruses, very high evening cortisol levels, low D and low B12. All of these need to be addressed differently and cause differing symptoms. Sometimes severe neck pain and headache are my primary symptom. Sometimes my muscles are weak or I get extremely dizzy when I stand up. Depending on what is going on with me will dictate what I can do and what I need for treatment. Bottom line – don’t offer recommendations. Do offer help. We need it more than you know. Here is a great blog about how you can help someone with LD or other chronic illness.
If you are interested in better understanding lyme disease, talk to your lymie. But don’t expect to do it standing in the produce aisle of the grocery store. LD is complex, complicated and controversial. There are political challenges to the diagnosis and treatment that are not easily explained. You will hear more and more about this in the coming years as there is legislation under way to try to fix the challenges. We are learning more and more about misdiagnoses; this is leading to a lot more people being diagnosed with LD. It is the fastest growing vector-borne illness. It is affecting more lives than ever.
So if you truly want to know more, ask to come visit your lymie for a couple of hours and be prepared to ask questions and to listen. They would love to know you care and are interested in what’s going on with them.
God is still God. God is still good. To Him be the glory.