WHAT DOES A LYME PATIENT WANT FOR CHRISTMAS?

Have you ever wondered what’s on the Christmas wish list of a person who is chronically ill? What could he possible ask Santa for? Would his wish list look similar to yours?  Let me start by saying that the correct answer is not snow. Nor ice, 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 Xmas 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.

 

Therefore, 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!

 

 

 

LIVING WITH LYME

Whenever someone asked me how was it to live with Lyme disease, I was never capable of fully explaining how that felt, without worrying for leaving something out or getting the audience bored.

No one can understand the amount of pain a Lyme sufferer must cope with on a daily basis, nor how much strength or effort it takes to go through the day, unless they go through the same thing.

Throughout the years, I learnt to cope with Lyme. Some days I win, some days I lose. It’s always a struggle. I chose to focus on what the positive aspects of my life and call myself lucky for so many reasons.

Today I stumbled upon Marisol Thomas’ speech at the Global Lyme Alliance Galla. I was moved by the way she described her daily struggle. I don’t think one could have done a better job! She really deserves that Global Lyme Alliance award!

Here’s a link to the Globally Lyme Alliance website.