No, really. Please believe me.

This week I’d been having a particularly bad spell. My joints were more painful than usual and very swollen which never used to accompany the joint paint. My migraine, now on day three, had gotten to that phase where sitting up or even thinking about standing made my skull throb and feel like it was going to explode.

My neck felt like it could no longer hold the weight of my head. I was struggling.

I wanted to have some blood-work done to see what, if anything, was causing this new flare in symptoms. I was writing my doctor to ask what tests to run. I wanted my SED rate checked to see if the level of inflammation in my body was as high as it felt. Because if it resembled anything close to the misery I was feeling, I was thinking (hoping) the blood-work would reflect that.

It didn’t take long to realize what a crazy thought that was… Was I really just hoping, no, wishing my blood-work would come back with poor results!? Yes. And I’m not afraid to admit that. As a Lyme patient I am so hypersensitive to blood tests not reflecting my illness, my real, chronic, debilitating illness. Because I’ve been told over and over by so many, that my tests were indeterminate, or my blood results were ‘fine’ or heard, “We just can’t find anything wrong with you!” or, “You’re a medical mystery, sweetheart.”

As patients of Lyme it’s become a reflex for most of us to be on the defense 24/7. “No, really I’m sick.” “Yes I know what that person told you but this is real” or sheepishly repeating “Lyme Disease” to the ER doctor standing over your stretcher, indignantly standing his ground that such a diagnosis doesn’t exist, and therefor you must be crazy. An unspoken shame I’ve become accustomed to.

My symptoms are as real as the chronic disease that has caused them. My pain is as legitimate as anyone else’s… So why do I still feel like I need justification? Why do I still want tangible results to validate the way I feel?

Because, Lyme Warriors, this is as much a symptom of this disease as the joint pain and the brain fog; the relentless need we feel to prove we are sick.

Please always remember how strong you are. And that fighting this fight, is something to be proud of.

About Lyme Chick

Lyme Disease advocate/warrior still learning about Lyme treatments/recovery and wishing to inform, support, and commiserate with others along the way.
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20 Responses to No, really. Please believe me.

  1. Jayne says:

    I feel exactly the same and yes, what a fight it is. I most often pass on going to the ER when I absolutely should because my head’s inflammed, my organs hurt, I can’t move or breathe right, but to think that when I get there I will be dismissed or eyes rolled at me causes me to fight, pray and hope I wake up in the morning by staying home cause I’m tired of being insulted by the staff who are indifferent and don’t believe chronic lymes exists. I’m tired of that fight.

    • Wanda says:

      Jayne, I think the constant trying to prove your sick is the most frustrating of this decease.
      I don’t even mention it anymore when I go to a new Dr. For what to get looked at like I have two heads! I am very close to telling the next person to go to hell or educate themselves. What gets me is if Lyme does not exist then why Was I taken off the bone marrow donation list? Why can’t they get their facts straight!!! Ughh gets me angry talking about it. Hope today is a good day for you. : )

  2. Exactly how I feel! Thanks for putting my inner thoughts into words!!

  3. Jane says:

    Well put…and completely sums it up for so many of us. We just want to be recognized with a disease and not labeled as a “kook”. Love your blog…hate the disease!

  4. Lois Jones says:

    I recently went and had acupuncture performed by a Chinese MD. She gave me a Chinese tea formula that is similar to treatment for malaria. I make and drink 2 cups per day. It tastes horrible but it is helping more than anything I have tried in the past. I still have flare days, but not as severe or as often as before. It has really worked on the migraines and brain fog. Even my GP thought that I looked better. I would advise all chronic lymies to give Chinese medicine a try.

  5. Penny Nichols says:

    All I can say is Amen! The lack of feeling believed or validated is 3/4’s of the battle! Just had an episode w/ an urgent care dr last week…”Lyme disease, hugh?? Did you live in upstate NY?” (me)No, but Lyme is in the south! “Who diagnosed you?…let me guess Dr. Jemsek?” (me)Yes as a matter of fact he did, and I’m thankful for him! He saved my life. The dr rolled his eyes, turned and found a reason to walk out of the room. I could have decked him!! Unfortunately the migraine I was suffering from helped me keep my mouth shut.

  6. Jan says:

    Hey Lyme Chick,
    I have had one of the worst weeks in years. I have struggled since ’94 with this DD and still “forget” when I get hit with a flareup like this one. My world has gotten smaller and smaller socially as people freak out because I am not getting well for them or according to their terms. I work from home and believe this has kept me alive.
    My LLMD is a wonderful comapssionate person who has a great sense of humor. I have learned much about realizing no test is going to accurately depict what is happening to my body. I have to believe myself above all else!
    Thank you for being there for us!

  7. lymelife82 says:

    I think that pretty much sums it up. Great blog!

  8. Steve says:

    I agree so much! I am 47 years old and have never had the joint pain,but suffer daily with the dibelatating fatique and brain fog ohh and memory issues. Going to a support group meeting for the first time tomorrow. Heres to tomorrow…Steve

  9. CJD says:

    “Invisible” illness is doubly hard, because people can’t SEE what the problem is, they can’t MEASURE what the problem is, and they can’t FIX it, or at the very least don’t think it CAN be fixed. Simply, if they can’t control any aspect of it, they close their minds and say it doesn’t exist…… For years I tried to get people to understand I was sick. One day, when someone told me that no one believes me, I threw my hands up in the air and finally ‘got it’. “SCREW EVERYONE!” I shouted aloud. The only thing that truly counts in all of this is GOD”S opinion, MY opinion and MY LLMD’s opinion. All those other people can’t make me feel better. Only my God, my doc and myself as a team can get me through this……. It was that day that I took my power back and have never looked back.

  10. Grace says:

    It’s such a normal, healthy desire to receive validation for our tremendous suffering. But I’ve learned to say to healthcare professionals that “I’m WELL aware of the political controversy regarding Lyme. You are entitled to your opinion, as are my well-educated lyme doctors. However, I didn’t come to ask your opinion. I just came to see if you can help my pain right now. Can you help me or not?”
    Usually in the midst of a terrible migraine in the ER, it’s hard to get all this out. But I get enough out that they don’t bother lecturing or rolling their eyes at me.

    I’ve also learned to severely limit or go No Contact with family or friends, who still refuse to believe me or who want to lecture me. They are “vexations to the spirit”- the last thing I need to help with my recovery. Learning who my “safe” people are and who aren’t, has been really helpful for me. Once I’ve experienced repeated injury from a know-it-all or those who doubt my symptoms, I keep a healthy distance and limit my contact with them to just superficial pleasantries about the weather. They don’t have the right to rub salt into my already painful wounds.

  11. Rose says:

    I’m so tired of my GP ordering tests that are unreliable at best because she’s no equipped to deal with a LD patient and doesn’t want to refer me to a Dr. who is. There are good-ish days and there are crappy days. I just have to hope that on the days she forces me to see her instead of a specialist I’m having a crappy day so she can’t deny that I’m sick.

  12. Brenda says:

    Gave up on doctors long ago. They can take their attitudes and useless tests and… stay out of our bank account! In my case the lyme rash has reappeared several times. I took photos and brought them with me and they STILL didn’t believe me. As far as I’ve read, nothing else causes those. I’m done trying to prove to these cement blocks, at my expense, that I have lyme. Thousands of dollars later, I still have lyme. I want a refund!

  13. sneaks says:

    please make it stop. i hate this disease . over and out

  14. Lionel Fibonacci says:

    I wish I could make you all feel better. I got treated five years ago when I got it, but I’ve seen its effects everywhere… locked in with a lady with serious Lyme-induced mental issues for two weeks, and the biggest website network to never see the light of day is sitting gathering dust because of what Lyme did and is doing to my ex-boss. Someone trying to play video games despite Lyme disappeared from my group over a few weeks. I know your doctors may not admit that you’re sick, but I know what you’re going through. My sympathy and best wishes for each of you.

  15. Wow. This is my first time here and this blog entry blew my mind. So eloquently put out there for all to read. Then to read all of your comments. I was just started on treatment for Lyme 2 weeks ago and the doc feels I’ve had it for a long time. Best I can figure is 6 years, but maybe more. Then I was a young parent of 2 working full time and trying to keep house too. Who wouldn’t be tired all the time. Then the fevers started. After 2 months of fevers, a lot of tubes of blood. CT scan of head and trunk – all looked fine. Then I was sent to an infectious disease doc who did find CMV and EBV. Figured that was it when I would get ‘flares’. Only I got more symptoms. Now it seems I have had Lyme for who knows how long and the neuro symptoms may or may not go away. Thank you all for taking your time to share your tale and providing support for all, including newbies like me. I’m learning more everyday. Thank you!

  16. Rachel Petersen says:

    Tonight I went to my new husbands office party and everyone was congratulating me on my wedding and then asking normal questions like “and what do you do?” and I say, “nothing”, I have Lyme disease and I am really sick. And people’s reactions are all over the place, but no matter what I hate these conversations and I hate doing “nothing” because this hell is far from nothing, it is everything and occupies every second of my life. If I meet people I will never see again I make something up and tell them about the great career I would and should have if I could get out of bed! Another year has gone by and at the begining of every year I think I will be well by the end of this year, and it still has not happened. I won’t let myself believe that it never will. Never lose hope, without it we have nothing. We are all so strong and only we can understand what this is like, it is impossible to convey the many levels of misery.

    • Brenda says:

      Rachel, I too am sick of the “what do you do?” question. Or the “why aren’t you working?” – even from family members. Like you wrote, it is a normal thing for strangers to ask. I haven’t come up with a good reply. People don’t like to hear about illness, even if it’s true.

      Our insurance company just sent another letter insisting that we call immediately to tell them if we have other insurance. So, I’ll call them AGAIN and tell them AGAIN that I have lyme disease, I’m not working, and there is no other insurance. I asked their reps the last three times to put a note in my file stating this, but either they didn’t, or my file was never checked.

      Congratulations on your marriage. I’m glad you have a partner to help you with this.

      • Jayne says:

        I like responding, well I used to be in administration and did very well, but now I’m working from home, so to speak, I’m fighting chronic lymes disease, it’s a rough job to fight for survival so if you could keep me in your thoughts and prayers I’d appreciate it alot. Watch out for ticks! Thanks for asking, it is nice to meet you. I’d love to hear about you and your family……

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