Birthday wishes
Image source:Pixabay
Have you ever wondered what’s on the birthday wish list of a person who is chronically ill?
What could he possible ask for? Would his wish list look similar to yours? Let me start by saying that the correct answer is not a present. Not a book, nor a gift or a warm pair of socks! He doesn’t dream of any of these.
What a Lyme sufferer really wants is to get well and leave behind this bad dream. Since getting a cure for Lyme is not a viable option (yet!), his second wish for his birthday is recognition. It may sound strange to you, since only an insider to this condition may know what that really means.
A lymie wants and needs recognition for his condition.
It is his right to be treated with the same respect and dignity as any other human being who needs treatment and care. The last thing he needs is a stranger telling him his illness does not exist, that his symptoms are psychosomatic or to be treated as an attention seeker patient.
Unfortunately the lengthy process of diagnosing Lyme requires him to pass through various hoops. In order to get a proper diagnosis, he has to see an endless list of specialists, hoping that at least one of them would be Lyme literate.
A person infected with Lyme needs and deserves to be given and same type of care, as any cancer fighter, AIDS sufferer or any other type of autoimmune disease patients (MS, Lupus, RA, etc.) when he reveals his burden. Sadly, instead of empathy and compassion he faces raised eyebrows, closed doors, multiple misdiagnosis and even ridicule.
This scenario is not only happening within the doctor’s office but sometimes it occurs within his family as well, which makes it even harder to deal with. It’s no surprise that anxiety and depression come along with Lyme! It’s tough enough that he has to cope with all these symptoms caused by Lyme and the co-infections. Having to reassure others that he is not faking the symptoms is just too much!
I bet that it never crossed your mind that a Lyme sufferer has to worry about losing his disability income just because others believe he doesn’t look sick enough. Anyone dealing with an invisible illness, becomes an easy target to all sorts of acid comments or remarks which can have a negative outcome.
A Lyme patient is fed up of being asked if his condition is real or not.
He’s tired of seeing so many doctors and not getting an answer to the questions: Why his body is falling apart? or Why he is denied treatment?
His illness is as real as you are! Just because your knowledge is limited, it does not mean you can label him or decide his faith. What you can do is learn, educate yourself in order to grow compassion and empathy towards those who got affected by chronic Lyme disease.
A Lyme warrior is done dealing with politeness and rhetorical questions coming out of ignorance or oblivion.
Why a Lyme warrior and not simply a patient? What sets him apart from the rest is his incredible strength to fight for his right to treatment, as he deals on a daily basis with the burning under the skin, chronic fatigue, joint pain, flares and so on…
Even on a good day, which rarely happens, a Lymie has to cope with pain. Life doesn’t stop just because he got sick. Life goes on and so does he. Kids need to be cared for, meals have to be cooked, chores have to be attended, homework has to be done, etc.
Ask yourself if you’d be able to cope with all these and still move on with your life, before you question or judge anyone affected by a chronic illness!
Here are other Lyme-related posts:
CHRONIC LYME DISEASE IS A REAL THING
TOP 10 WORST SYMPTOMS OF LYME DISEASE
WHAT ARE THE SIGNS AND SYMPTOMS OF LYME DISEASE?
WHY IS LYME DISEASE TOUGH TO DIAGNOSE?
HOW CAN YOU PROTECT YOURSELF AGAINST TICK BITES?
JOURNEY TO SELF-DISCOVERY?
HOW I FOUND THE SILVER LINING OF LYME DISEASE?
9 WAYS TO KEEP A RELATIONSHIP GOING WHEN BOTH PARTNERS ARE ILL?
All of the above posts were written by me, as part of my Lyme Disease awareness campaign. They were originally published on my personal website A-ZLYME.COM .
If you would like to learn more about Lyme disease, visit A-ZLYME.COM. On my A-Z Lyme blog, I post weekly Lyme-related articles which I might re-post on Steemit, in order to increase the awareness about this infamous illness.
Unless stated otherwise, all photos used in this posts are taken and owned by myself. If you wish to use any of my images, please contact me!
Thank you for reading, I hope you enjoyed it! Please leave your feedback in the comments, I would love to hear your thoughts!
I can imagine this to be very aggravating since if you mention your illness too much, people think you want attention and if you mention your symptoms too little people think you never even had anything. The thing as with a few people I know, although I am not aware that they have had any diagnosis apart from the obvious mental ones and have no physical manifestation other than what they wish you to know of. This results in them spending huge amounts of money convincing everyone they have these and need those pills.
I think what I am trying to say is that on one side a person can argue that treating the invisible illnesses with a bit more caution is alienating them but can be helpful.
If you are not treated better by those who "supposedly" know you over time and they still seem to think you are faking it, then those people are just shit. It is all a balance and given evidence one should weigh this, the people I know personally, well that is a case of nod and smile since they are so full of shit that I feel they fuck it up for people who are truly suffering.
Yes, it would be nice if people acknowledged your illness but if they are going to be typically human then maybe they should just shut the F#$%up and move along.
People (doctors included) need to grow more empathy towards those who are sick or suffering from any type of illness, visible or not. Often doctors forget they are treating patients and act as if they deal with numbers not humans. People judge and label those who are sick or suffering because of their lack of understanding. Their ignorance turns them into insensitive persons. A lot of those who are truly suffering prefer to distance themselves from others in order to avoid getting hurt, judged and so on.
As I read your posts relating to Lyme and the chronic illness aspect I begin to get a better understanding of what it means for your day to day.
@insideoutlet suffered from major chronic illness so I have seen how it all works she best explained it to me with the spoon theory.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I am sorry to hear about @insideoutlet having to pass trough that. It is funny you mentioned the spoon theory. I had heard about it, but it is only recently that I really learnt more about it from one of @soyrosa's posts.
I love the spoon theory, when I started researching more on my illness I kept hearing them called Spoonies and I was like what the hell that. I soon found out I was one lol. I still get easily dehydrated and run down but in general I can use my Spoons wisely.
It took me some time to understand how to use my spoons, but I did. Glad to hear that you are well. ;0)
Flannery O'Connor wrote that sickness is "a place....where there is no company". It is true that when we are sick, we have to deal with that on our own, no matter how many people may support us. But if people don't support us, it is so much harder to meet the personal challenge of illness.
Lyme disease actually does have a lot in common with lupus, in that both are notoriously difficult to diagnose. The average lupus patient waits four years for the clarity of a diagnosis. That's the average. There are patients who go much longer without a diagnosis. Without the clarity of a diagnosis, there is the suspicion you describe, of psychosomatic disorder. And also, there is an absence of treatment.
I think one of the flaws in modern medicine is the insistence on meeting strict criteria in order to receive diagnosis of certain illnesses. Without the authority of a diagnosis, many doctors lack the courage to go forward with compassionate care. Doctors need to use science at all times in their practice, but they also need to be creative and flexible. They are not treating insurance codes. They're treating people.
My theory--if people are suffering, believe them, and address their pain.
If everyone would have shared your belief, life would be much easier for all of those suffering from an invisible illness and not only. In my case, it took me close to 2 years to get diagnosed.
I could not agree more with this statement!
I have seen over 20 specialists until I got a Lyme diagnose. Then when I got it, my insurance refused to pay my meds because "there was no Lyme disease in Canada".
I am sorry you have suffered and that suffering has not been addressed.
Thank you. I am much better now. I am trying to bring my 2 cents and raise more awareness about it because a lot of people get misdiagnosed and their health goes down the hill.
Thank you for sharing this with us and I hope that those who need to "hear" it, do!
My son suffers from anxiety and depression and your post was reminding me so much of what he goes through, or anyone who has any type of mental illness for that matter! Just because people can't "see" an illness, doesn't give them the right or arrogance to treat you that way!
Is it really your birthday? If so, I hope you have a good one, and if not, I wish the same for your "regular" day :)
Sorry to hear about you son's struggle. Like you said, fighting an invisible illness ain't easy.
Yes, it was my birthday. Thank you for your kind words! Have a wonderful day!
Thank you! I hope you had a great birthday too :)
Happy belated birthday, @lymepoet I hope you enjoyed your day and it was filled with supportive people and love.
I do understand the feelings that you experience with this illness as I once had a connective tissue disease (also invisible) and suffered for 6 years. Definitely not easy having a chronic illness. Not only for the physical problems, but the emotional toll it has. And fatigue.....so hard to deal with.
I went through years of doctors and all kinds of weekly, sometimes daily torture treatments....the last appointment - the doctors wanted to experiment on me by administering chemotherapy - just kill everything off and see what survives.
This is when I had miracle of re-direction take place. Divine intervention to be exact. Someone showed up at my front door with a list of alternative doctors and I didn't question, I just trusted (what did I have to lose at this point).
Functional doctors are where the real healing takes place. Within two weeks my numbers budged after 6 years of steady worsening. I had months of vit C IV's (among other things) and the other people that filled that IV room had anything from cancer, lyme to cancer and structural problems, RA. Everyone I spoke to (given that we had hours together) improved and were in the early stages of remission. Pretty amazing. Change my life.
Functional Medical Doctors are truly life savers. I also went to an acupuncturist. Things get a lot easier once your energy improves and you're not so fatigued.
Thank you for your wishes and sharing your story. I will look more into functional medical doctors, as I am not familiar with their approach. I am glad to hear that you were able to recover and feel better.
Sometimes they go under 'integrative' too but you want a medical doctor. A lot of times you can find really good ones through your local healthfood store (word of mouth - they hear it all from people coming in their stores)....maybe even your citydata forum. When you get some names then followup researching reviews, their website, their credentials/awards.
I can promise you that this is the way to go. I was at death's door. There are things that can be done to knock lyme back and even rid the body of it. One of the other aspects of being so sick is that the environment in doctors offices are additionally depressing and scary and demeaning - NOT with these doctors - you are a human being not a number. Everything is explained to you rather than told to you, your appointments are an hour or more rather than 5 or 10 minutes. And they will offer you several cutting edge therapies that actually work. You will be a partner in this treatment with your doctor and you can also keep your other doctors if that is what you want to do - it's about teamwork. Honestly, I think this is why a lot of conventional doctors end up going into functional medicine - through their experiences with patients.
It's a lot of work but once your energy starts rebounding, it gets MUCH easier - which is pretty fast. HOPE
Please feel free to DM me if you have questions or need help navigating.
I found myself in your article and I have to say that it even brought some years into my eyes. Because I never found the right words to explain such feelings like anxiety, depressions or any other illness that someone may suffer of without being any physical features that can be noticed.
I recently had a fight with someone trying to explain what a person with such problems actually feels but it's like screaming in the ear of someone who doesn't hear - completely hopeless.
I was going to nominate the post to get curated by anomad but it must have the steemromania tag 😔
You have all my respect and appreciation for everything you do and write about 💚
Thanks, honey! I appreciate it! I also added the steemromania tag to the post. You could try to have it curated now. Thank you.
I can attest how people are judgemental on something they don't understand or have the misunderstanding that it is not real that its just in our head, or that we are just being whiny.
Sometimes I just want to start hitting people with chairs when they go all high and mighty.
I applaud you for bringing focus and information on Lyme disease.
Thank you! The worse is when even faced with facts, the same people turn a blind eye on it, just because they hang on to their assumptions because they do not like to admit they had been wrong.
Much love to you honey, thank you for sharing your story with the world 💚💚💚
Thank you, Petra! 💖
I can't imagine what it must feel like to have people questioning you that way and having so much doubt directed at you. I hope with more awareness things get easier xx
It's hard because your energy levels are almost depleted due to the illness and you can't afford to waste more energy on fighting others, convincing them that you are not seeking attention, that what you are going through is real. It takes a toll on you both physically and mentally.
It is too bad that people still have to be filled with such doubt when it comes to things like this. There are some celebrities in the US that have been afflicted and I think that helps put a face on the disease if you don't know someone personally. Happy Birthday to the person you speak of. May their day be filled with lots of love from family and friends.
Thank you! Shania Twain, Avril Lavigne, Alec Baldwin, Yolanda Foster, Ben Stiller are only a few of the celebrities that got Lyme and helped raise awareness. Nowadays people here more often about Lyme disease, it still needs more attention, as people don't know much about it. It's hard to believe that a simple tick bite can put you in a wheelchair, but it's true.
For sure! My wife and I camp in the summer and we are always very cautious about where we go and where we let our dog go. The past couple of years the tick population has been very high in our area and the local news stations frequently are telling people to be on high alert.
It's great to hear that thé local news stations inform the population about the possible danger!