TOUCHED BY LYME: It’s time for me to stop joking about my health
Guest blog by Shira Gusfield
If you ever ask me why I’m at the doctor’s office so often, I say I don’t feel well most of the time. I’ll probably give a small laugh, shrug my shoulders and say with an embarrassed smile on my face, “Oh, I’m just the sickest healthy person you’ve ever met.”
This might elicit a little giggle or a knowing nod or just a pitying look from you. But you probably won’t ask many more questions, and if you do, I’ll make some more jokes about my symptoms, how silly they are and how much I’m overreacting to them.
I can’t tell you how many times I’ve had this interaction. It pretty much always looks like what I described. I’m sure people walk away from these conversations chuckling about how odd I am, and then they likely don’t think much about it anymore.
And next time they see me, they laugh when I accidentally let it slip how ill I feel because they think they know that I’m just being a hypochondriac.
But here’s the problem with all this: I’m not the sickest healthy person. I’m not a hypochondriac. I’m not overreacting to my symptoms. I have a serious chronic illness, Lyme disease, that I have to work very hard to push through every minute of every day. Yes, I look healthy. But I’m not healthy. I am sick. I desperately want support and understanding about my illness, but that’s not what I receive when I make jokes about my symptoms.
I know that people won’t take my challenges seriously if I make light of it, yet I continue to respond to questions this way. It’s hard for me to understand why I do this. I think it’s partly because I’ve struggled to accept the Lyme disease diagnosis.
You see, I keep comparing myself to others with Lyme disease. When I compare my symptoms and experiences with Lyme disease with others who also have the illness, I always end up telling myself I’m not sick enough to have Lyme disease.
I start to believe my life hasn’t been destroyed enough for me to have Lyme disease. In a weird way, I don’t feel deserving of the diagnosis of Lyme disease. And since I can’t truly accept I have an illness, it leaves me feeling like I must just be blowing my symptoms out of proportion.
Somewhere inside me, though, I know I’m not overreacting. I know I have Lyme disease. And I’m know this illness is challenging my ability to function on a daily basis. It’s so isolating to be one of the only people who knows this truth. I have few people to reach out to when I’m having rough days or new symptoms. I have to figure things out on my own, which is very difficult when my thinking is so clouded from Lyme disease.
So, I need to stop comparing myself to others. But first and foremost, I need to stop joking about my illness with other people. Comparison is a difficult thing to stop, but I can make a conscious decision to be honest with people about my struggle. I need to train people to take me seriously.
I think my jokes have essentially trained my friends and family to minimize my struggles, so now it’s up to me to retrain them with direct honesty. It’s vital that I do this, because I need support to overcome my illness. My friends and family need to understand how the challenges I face and how hard I’m trying to keep going forward with my life.
I’m making a commitment as I write this not to minimize my symptoms from or my experiences with Lyme disease. Never again will I refer to myself as the sickest healthy person, or make any similar jokes. I’m going to help myself achieve wellness and health by accepting that right now I am sick.
Shira Gusfield lives in Southern California.
Thank you for this. I totally relate and also know how alone we can feel with this illness. It is as if we think no one realizes how poorly we often feel, so we go into denial ourselves. Like you, I must first fully acknowledge that, yes, I do have Lyme Disease, and then accept the responsibility of exploring ways to better health, perhaps not perfect health, but improved health!
Dear Shira: I also have Lyme Disease and three of the coinfections. I am 83 and have gone from feeling terrible and hopeless to better, with up and down days. I bought all of Stephen H. Buhner’s books on Healing Lyme Disease, and followed his core protocol, which are mainly natural specialized herbs. I have had some antibiotics, although I don’t do well on them. I have to study treatments and rely on Doctors tests, as this can be very costly. I also find that going gluten free, soy free, and especially sugar free goes a long long way to reduce inflammation, allowing the body to heal and fight the infection. I know it is tempting not to exercise, but that is also healing, especially in the sun. I am 80% better, with some aches and pains, and have better energy. I wish you all the best and a speedy recovery.
Just be honest. You have nothing to be ashamed of.
By not telling people what you have, not telling how you feel you are giving away control of your own story. Believe me, they are already diagnosing you in their minds and, for those who don’t know what you have, Lyme is the last thing they are thinking of. Because you don’t reveal your diagnoses, they are probably thinking mental illness or drug or alcohol problem.
For those who know what you have, they probably don’t know what symptoms are involved with Lyme. There is not that much public knowledge about Lyme, especially if you are not in a high Lyme area. It sucks that we have to educate people bit that’s the way it is.
Thank you for being real about this issue of so called “invisible illness”, Shira.
I also have Lyme and I’ve experienced being told, “but you look so healthy” so many times before too. It can be frustrating, especially when the last thing you feel is healthy.
But, you’re right not to minimize your Lyme disease symptoms. I too have done this many times before. It’s an easy trap to fall into. But, I realized it’s not being honest. And how can I expect my loved ones to understand what I’m going through unless I honestly answer them when they ask me how I feel?
Great article!
My daughter has Lyme with co infections we need another opinion not just one holistic Dr please help us
I totally understand how you feel. You are still young. I sincerely hope you can find relief that will let you live a normal life. When I was young, child-bearing age, I had ulcerative colitis. I now know that was Lyme disease. I was embarrassed to be sick. I tried to hide the fact that I was sick. Even when I was in the hospital, I didn’t want all my friends to know. I coped, and coped, and coped, and kept pushing on. Degree, 4 children, always coping, not wanting to admit I was sick. I was even angry at myself. My heart goes out to you. You have a lot of living yet to do. My prayer is that you will get to really “live.” However, do not keep making the mistakes I made. Tell them is it Lyme disease and co-infections which always come along with Bb. Tell them it is deviating and stealing and real quality of “life.”The more we tell the more we educate the pubic, the more we may make it possible for Lyme disease to be recognized or what it is. the more informed the public becomes, the greater the chance that those who follow us, and even you because of your youth, may have a greater chance to really have quality of life. I worked with a man 8 years my junior. He had really faulty reasoning. He told me he knew he probably had Lyme disease. I pushed and got 7 years of treatment. He did not ever seek treatment. He died last summer. I am older, but I am not dead, and though not well, I do have a much better quality of life that would not have had. At one point, before treatment, I could not even get up off of the floor and could not raise my hands as high as my shoulders. Treatment works, early treatment is far, far, far, far, far, far superior.
I can see how Lyme can cause colitis if it attacks the colon. But it’s not the first symptom people think of when you think Lyme. I’m sure your diagnoses was delayed because of it.
Just curious, what was your co-worker’s official cause of death? We know the underlying cause was probably Lyme.
I understand why he never went for treatment. I’m sure I have Lyme and/or some other tbd but I haven’t been diagnosed or treated yet. Money is the biggest issue. My family hasn’t always been understanding. But the biggest reason I put it off is because I was treated so rudely by two of the three doctors I saw who refused to diagnose Lyme, that I couldn’t deal with that again.
I have milder symptoms than most so I bargain with it. I’m still working, still able to get around so I tell myself that I can deal with it, put up with it. But after a recent flare-up, I know I won’t be able to put off treatment forever.
Shira, I was so struck by your words “I am the sickest healthy person.” My MD used to say that to me, when test after test came back negative, and she would say “The good news is that all your tests are normal, in fact, your numbers on everything are great. People would love to have your blood pressure, your cholesterol, all your labs. You are the sickest healthy person I know.” I lived with Lyme for 15 years before it was finally diagnosed by a LLMD, and was sent to psychiatrists, therapists, and a host of other “ists,” before I developed neurological symptoms significant enough that anyone believed I was really sick. Then, EVERYONE was excited. I was diagnosed with Alzheimer’s disease. Needless to say, that was not accurate, as I am not dead. But it was a frightening journey, and one that has left me with on-going brain damage. Thanks for sharing your story. We need to hear from each other!