One thing that always throws me off is the comment, "You look like you're feeling great today!" While it's a blessing that I don't usually look as badly as I feel, it's incredibly jarring that my physical appearance can be so utterly incongruent with my pain levels.
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| This is what Lyme disease looks like. You cannot imagine the pain I was in when this photo was taken... |
Inside my body on any given day, I'm battling dozens of symptoms that no one can see. Yet, I'm expected to function like a "normal" person, because I still look like a normal person (No comments from my brother here!). When I first came to my Lyme doctor, I had over 60 symptoms--and not a single one visible to anyone else! With treatment, we've whittled that symptom list down to a much smaller number of symptoms, but like I said, there are still dozens.
With so much going on in my body and in my life that no one can see but me, I feel so torn--after all, it's really nobody's business but my own if I'm sick, so why the need for people to know and understand Lyme disease? Simply put, doctor after doctor discredited my Lyme disease as being all in my head because I didn't/don't "look" sick. I don't want others going through the hell that I went through to get diagnosed, but unfortunately that's exactly what is happening all across the country.
The fact that in every single state in the United States, you can drag around a list of over 60 symptoms of an endemic disease and be told over and over that there is nothing wrong with you "because you don't look sick" pushes me to keep telling my story--the story of Lyme disease--until it is heard.
Just out of curiosity--Lyme friends, how many of you were told by doctors that "it's all in your head?"
me! I was! I was!
ReplyDeleteMe, too! Two for two, here! :)
ReplyDeleteAFTER I was diagnosed, I went to my Primary (who I loved) to give him the news. He laughed and said: 'You don't have Lyme Disease. I would KNOW if you would have Lyme Disease." He then proceeded to hand me a pad with the title: 'Are You Depressed?' and asked me to complete the questiononaire. I HAD A CDC POSITIVE TEST IN HAND AND ALL OF THE SYMPTOMS!!! Needless to say, I need to find a new primary care doc. It is RIDICULOUS what we have to go through! And it kills me that others are going undiagnosed because doctors are just not educated on this disease. Wonderful post, as always Alyson!
ReplyDeleteGreat post, Alyson! Ten years of hearing I was nuts. The last straw was when a hospital doctor pulled my husband aside and asked if I had a mental illness that I was afraid to discuss publicly, because I appeared to be creating pain that wasn't actually there. They sent me home with the number of a psychiatrist and told me that I was having trouble walking because I was going to get my period, and hormones can do strange things to a woman. My husband said he'd never been so close to punching a person!
ReplyDeleteI was told many times by doctors that it was alll in my head...or due to stress I could not cope with. Friends and family hinted I was not really sick. Or talked about me behind my back. My oldest daughter told her dad she never thought I was sick until I got the Lyme diagnosis....and I still can tell she things I over dramatize things...It is discouraging.. BUT when my LLMD told me I had Lyme I was so surprised snd scared but relived...someone believed me!!!! Someone had answers..It was NOT in my head!...well it really was because it was LYME in my head!
ReplyDeleteThank you, Alyson for this post. I was told by 5 different doctors that nothing was wrong with me. My primary care doctor still does not think I have Lyme even though he has seen 4 positive Lyme tests done by three different labs. Someone said to me the other day, "well, you should be so lucky that you caught this in Boston. We have all of the best doctors here.". Yes, we do...but very few of them will treat Lyme patients. I blOg to help my friends and family understand and hopefully to help others who are going through this.
ReplyDeleteBrandi
Me too, me too. If I hadn't switched docs, I would probably still be wondering what the heck was going on with me. Amazing huh? The roads we have to travel to get someone to recognize we are sick and that we have Chronic Lyme Disease because 20 years were thrown away by other docs.
ReplyDeleteWhile I was in Kodiak, (because people knew my situation) DAILY MULTIPLE PEOPLE would tell me how great I looked while I was feeling like death. Thanks for your post Alyson. Rings true for me and you put it so well.
Over the past 15+ years of having my body and mind ravaged by Lyme, I have seen several dozen different doctors. I think I have been diagnosed with just about that many different ailments too! However, it keeps coming back to "you need to get a grip on your depression". Yeah, how can I do that when no one believes how awful and pained I really feel? I loved this post!
ReplyDeleteAbsolutely. For over 16 years I have been told that I am psychosomatic. "It's all in your head--let's up your anti-depressant". Well, I have finally reached the breaking point. I have been looking for alternative ways to heal the body--and I am not a doctor (not that any have served me well, yet)--but I HIGHLY recommend looking into Teasle Root. It has changed my life--I am being treated with it right now. check out 4 Knees Journey, it has all the details. :)
ReplyDeleteIt's so refreshing that others understand the constant struggle we all go through!! My doctor finally believed I was in pain when I had to bring my dad into the office with me. There I am a 26 year old woman hysterical In pain with my dad, I felt like a child begging for someone to believe me! . I can't even begin to explain the nights I have spent in excruciating pain! And days begging god to let me feel normal! I wish everyone the best of luck in the future, keep fighting!!
ReplyDeleteHi. I stumbled upon your blog today and want to say thank you for sharing your journey. I am also battling Lyme disease and these last few days have been tough, but it has been uplifting to read your words today. Blessings as you continue to fight this battle.
ReplyDeleteBethany