Words can be devastating! They can hurt, wound, and destroy. Words carelessly spoken to someone with Lyme disease can devastate an already devastated person.
When I was sick with Lyme disease I experienced the wounds of words spoken without thought or care. These words were often spoken in a questioning manner. Questioning my sincerity, my honesty, and my illness. Sometimes these words were intended to offer hope but because of the way they were delivered, they were words that did the exact opposite.
It’s been awhile since I’ve experienced wounded words related to my illness with Lyme but when I recently heard them spoken to another suffering soul I found myself surprised by the reaction in my heart. I watched how these careless words drained hope right out of the recipient who was already suffering and desperately needed every ounce of hope she could hold onto.
Words That Drain Hope
If you have ever gotten Lyme disease, found a rash, taken antibiotics for it and experienced only mild pain and fatigue you cannot possibly relate your experience to someone who got Lyme disease, co-infections, and parasites. You can’t relate to someone who didn’t see the rash or didn’t have one, someone who went on to suffer inexplicably worse than you could ever imagine.
You have no idea what it’s like to have your immune system became so compromised that it battles against you. Or how these infections can spread to every part of your body causing severe and debilitating pain from the corkscrew-shaped bacteria that drills into every part of the body. You have no idea how it feels to have such a severe illness but have all your labs come out fine.
Life Changing Symptoms
When you’re speaking to someone with chronic Lyme you should know that they might have draining fatigue. They might feel OK one minute and the next minute feel like their whole body is shutting down. They may not remember things and might even have a hard time reading or comprehending simple things. They might have severe sensitivity to chemicals, mold, and everyday food.
These infections can even cause severe anxiety, depression and suicidal thoughts. They might have draining fatigue and mental impairment that lasts for months or years. These infections can even cause severe anxiety, depression and suicidal thoughts.
The Lyme sufferer might have serious cardiac symptoms like strong heart palpitations or irregular heartbeats, they might have dizziness, vertigo, fainting, and even seizures.
[bctt tweet=”If you’ve only ever had acute Lyme disease you cannot possibly relate your experience to someone who has suffered from late stage Lyme disease. #lymedisease #lymesuffer #aboundinginhopewithlyme” username=”aboundinginhope”]
Suffering breaks down a person’s ability to defend herself and someone who is suffering this much is unable to handle the negative and hurtful comments that come from those who don’t understand their pain and suffering.
Image by Anastasiya Babienko from Pixabay
What Not to Say
Here are things you should never say to a person who is sick with Lyme disease and tick-borne infections.
- I get tick bites all the time and never get sick.
- I had Lyme disease and got better in a few months.
- Why are you so sick all the time?
- You’re always canceling, don’t you want to spend time with me?
- Why can’t you get better, my friend got better and she didn’t have to see so many doctors.
- If you just try harder you would be better by now.
- I think if you had more faith you would have already been healed.
- God healed me of Lyme disease, maybe you don’t trust Him enough.
- I don’t think your doctor knows what he’s doing.
- Maybe you should move out of your house.
- All those weird herbs are making you sick.
- I think you’re pretending to be sick so that you can get attention.
- You just need to learn how to handle your stress.
- Why are you making such a big deal about your illness?
- Maybe you should see a psychiatrist?
- How can your whole family be sick?
- I think you just want to be sick.
- You talk too much about Lyme disease, if you didn’t focus so much on it you would get better.
Lyme Disease and Cancer
If you’re ever tempted to say these things or if you have ever said these things, Stop! Hurtful comments don’t do anything to help. Tick-borne diseases are complex, persistent, and extremely difficult to diagnose and treat. Having Lyme disease has been compared to having cancer but unlike cancer, there isn’t a reliable test, doctors are not even taking the time to acknowledge that this disease, or I should say “these diseases” even exist.
[bctt tweet=”The most important thing you can communicate to someone who has Lyme is hope.” username=”aboundinginhope”]
Not only do the majority of Lyme sufferers experience a complete lack of respect and compassion from the medical community but then they experience it from their own friends and family. They will even hear from well-meaning people who had a short bout with Lyme disease and think that because they healed within a few months’ time everyone should. There is no one size fits all treatment plan. Unlike cancer, there are no pink ribbons or government funding. Lyme disease doesn’t even have its own medical code and so every treatment must be paid for completely out of pocket.
Be A Hope-Giver
The most important thing you can communicate to someone who has Lyme is hope. A little compassion and understanding go a long way even if you don’t fully understand.
Lyme sufferers experience an intensity of pain that you may never know. There is often a fear of dying and the misunderstanding from so many causes a great deal of hopelessness. Suicide is the number one cause of death for someone with Lyme disease making it even more important to bring them hope and understanding.
Why not be a Hope Giver and learn how you can help those you know with Lyme disease. If you don’t know what to do or say, ask your Lyme loved one. I’m sure they will have some ideas.
I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to kycuyu health clinic and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment! The herbal treatment is a sensation.. My Lyme disease is totally reversed! this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier
What a blessing you were able to get better!
This is very true and often there is this judgemental attitude you get from other Chrisitans “you should do this…” “why do you miss church for months?” That sort of thing. It really does weed the fear of man out of our hearts. I can’t please man and God. He sees our hearts. Man does not,
Yes, Jessica it does weed out fear of man! I had to learn to focus on who and what was important and remind myself that through suffering we learn to be compassionate.
Thanks for shedding light on an often ignored portion of the suffering Lyme patients go through, Tricia. Some folks are simply insensitive ; others are clueless to the pain their words inflict. Empathy, discretion, and thoughtfulness go a long way in making those who are suffering feel less burdened. Hugs, Ali
Thanks, Ali, it’s true, many people don’t realize that what they say can have a negative impact on someone who is sick. When someone is suffering physical pain they are incapable of thinking clearly about a situation and find it difficult to interpret whether the comment was intended to hurt them. Erring on the side of empathy is definitely the way to go.