HOW DOES IT FEEL TO LIVE WITH AN INVISIBLE ILLNESS LIKE LYME DISEASE?

After more than a decade of being sick, I still get asked within my circle of friends or by extended family members how come I am not cured yet. Or why don’t I look sick like other Lyme patients they have seen in the news? Some insist on recommending me a either specialist or a home made remedy meant to bring me some relief, while others dive in pure oblivion and tell me Lyme is not real.

 

A few years back, I used to  get annoyed by these comments. I was disturbed by the fact they were not able to see what I was going through. I blamed them for not taking a step further and digging deeper in what my Lyme world looked like. I felt the gap between us grew bigger and bigger day by day. I couldn’t relate to anything they were interested in, while they failed to understand that I had hit rock bottom, that my priorities had changed and my life had turned into a Lyme wonderland.

 

Now I know that I was equally responsible for this gap, as I chose to isolate myself and keep my story and suffering private for various reasons. As a result, I lost a lot of people on the way and I am partially guilty for not doing any follow-up. I was too tired dealing with the havoc caused by my illness to think of others. Or maybe Lyme got me less  tolerant to nonsense. I don’t take it anymore. I am too busy digesting my Lyme cocktail to worry about what people think or want to hear.

 

During any social gathering that I attended, when askedHow are you? How are you feeling? ” I always replied It depends on how much time you have.” At that point I was able to see the confusion on their faces.

Then I would continue with my explanation. For those who were pressed or simply asked me a polite question my answer was: “I am fine! Thanks for asking!

To those who had a minute or two, I used to say that “there was room for doing better” and talk only about my dietary restrictions.

 

Only to those few who had five minutes to listen to me, I was giving a brief summary of my daily cocktail, explaining how the burning under skin felt like, giving a preview of day with my shifting pain, tremors, twitches, floaters, fatigue  and concluding with the level of pain from a scale of 1 to 10.

 

In the rare occasion I was being given more than five minutes, I would dare to talk about my anxiety or how lonely or depressed I felt. In most of the cases I would stick with “I am fine!” just to avoid having my audience bored or having another polite conversation.

 

I learnt to tailor my answers according to the time I was offered. Let’s be realistic, who wants to listen to a sick person venting about his day?  

One day I was not able to stick to my tailored answers and I simply blew off some steam. I could not pretend anymore I was not affected by others’ comments or reactions regarding my chronic illness.

 

Thus I decided to Lyme-educate everyone around me in order to raise awarenesses. I started to open up more about my symptoms, the anxiety and depression I was dealing with. For the first time in years, I was revealing a more detailed picture of how a regular day looked like for me. Their reactions varied and revealed a wide array of feelings: empathy, surprise, shock or boredom.

 

That was a valuable lesson which taught me that when no one played on my side, I had to put myself first. Therefore I changed. Lyme changed me. It bent me but didn’t break me down. I turned into a survivor and I don’t exaggerate when I say that. I got stronger! Think only at the level of pain I am constantly dealing with! On top of that, add the burning sensation which never leaves me and the chronic fatigue.

 

I doubt one would be able to cope with it and still be able of doing other things. I turned into a Lymie. I did not know there was a name for it. A lymie warrior and writer, as I found comfort in writing. When there was no one around showing any interest in what I had to say, I wrote it down. That spilled ink helped me get it out of my system. I dealt with feelings which I had no idea how to label or understand: anger, guilt, rebellion, despair, etc.

 

Soon the writing took a different direction, as I realized that my voice was being heard. I understood that it was within my power to make a change, to help others see what it meant to live with an invisible illness.

I was pleasantly surprised to see that my words brought comfort and helped others who were still struggling to come to terms with their illness. The isolating loneliness of a chronic illness takes a toll on you, more than you could imagine. Talking about it can only shorten the gap between the two sides.

 

What did you do to keep your sanity? What helped you move forward and empower yourself? What determined you to raise awareness? I’d love to hear your story!

 

 

 

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!