Why I'm Grateful for the Ways Lyme Disease Has Shaped Me
I have been sick with chronic Lyme since I was 13 (2003) but only got diagnosed in the beginning of 2016. I’ve experienced several misdiagnoses such as fibromyalgia, mild cystic fibrosis, myalgic encephalomyelitis… So basically, I’ve known my whole life I was sick, I just didn’t know what it was.
When I was young, I thought doctors would find what I had and cure me. I thought I would have the whole world ahead of me again. But then, I realized my pain wasn’t going away. I feel lucky because I was finally diagnosed with something while many others remain undiagnosed. I have been affirmed of the reality of my pain and complaints, but a diagnosis of a chronic condition is still very difficult to process because you know you will have to deal with it for the rest of your life.
However, a few weeks ago, I looked back at what I have been through and what I have done, and I realized that being chronically sick may have been and still may be my main source of strength. That it actually had a positive impact on me.
Don’t get me wrong, I’m not going to pretend I’m glad I’m sick, or that chronically sick people should always be positive because it’s a “blessing.”
I’m just saying our illness is our difference and is what makes us special and strong.
Always being positive is actually very unrealistic, because this is what the daily challenges I deal with look like:
With chronic Lyme, every day can be different and has its own symptoms. It means I can have a swollen knee today and wake up tomorrow with a normal knee but with severe breathing troubles. Or with a part of my face numb and difficult to control. In fact, Lyme symptoms are very numerous and seem to affect different parts of the body that are unrelated to each other. They’re here and then disappear then reappear again one day, and so on. Many symptoms have disappeared thanks to my treatments, but I know they can come back when I’m weak, and I know other symptoms will never disappear. I feel like I’m losing control over my own body, and that’s difficult to deal with.
When I started my treatment, I had Bell’s palsy, severe trouble breathing, difficulty speaking, swollen joints, muscles stiffness and my immune system was so weak that I would contract every possible infection. Now I feel much better, but I know I will always have rib and sternum soreness, poor balance, shortness of breath, muscle pain, neurological pain, numbness and tingling sensations in my hands and feet and exhaustion. I know it’s chronic, so I have to wrap my head around the idea of having this illness for the rest of my life. I have to adapt. I have to accept that I need to rest after showering, that sometimes I need to sleep all day, that my body doesn’t respond to common pain relievers, that I can’t walk more than an hour, that sometimes I need a wheelchair or crutches, that I can’t work full-time for now, that a symptom can suddenly come and mess my plans up and force me to cancel, that I can’t eat or drink everything…
My daily struggle is difficult to understand for people around me because most of the time, chronic Lyme is an invisible illness. Most people just see me when I go out. And if I go out, it means I’m OK. It means I rested all day to be able to go out, and it means I’ll probably rest for two days after. Other people just talk to me over the phone, and even though my voice often betrays my condition, those people would never guess that there is not a single day when I don’t have pain.
Nobody can understand until they are going through it. They cannot understand the pain. They cannot understand the exhaustion. I don’t think it is possible to imagine that anyone can be that tired or be that much in pain and still be up doing things.
The problem is that when people don’t understand, most of the time they don’t believe it.
Like every chronically sick person, I’ve heard things like, “But you don’t look sick,” “Someone is sicker than you are,” “Stay positive,” or “Why can’t you work?”. People tell you they know more about your pain than you do, people tell you to always be positive so you can get better, people doubt how severe your condition is, people question the very existence of your disease…
I don’t want to hear this.
What I need is for people to show me they recognize how difficult my situation is. They cannot understand, but they can accept it.
When people seem to deny or forget that I’m sick, when they tell me to be positive, I feel like I am not allowed to complain when I’m in pain, that I am not allowed to have bad moments and that I should keep everything to myself. I can do that. I can fake and pretend to be happy, healthy and not in pain. I have done this quite often actually. But the thing is that pretending to be OK doesn’t bring me anything positive. Instead, the pressure to be positive is stressful.
However, when people around me make space for negative emotions, I can open up to them. And surprisingly, that’s when I become positive. That’s when I stop confusing being healthy with being happy. And that’s when I can realize the positive impact my chronic illness has had on me. My disease is relentless, but it has made me stronger. Here’s why.
As a child and a young adult, I spent a lot of time in hospitals, and I met incredible people there. I met people from very different horizons that I thought only existed in movies. I met inspiring people. Three of them even became really good friends. Some had similar diseases. Some others had very different pathologies than the one I have. Some had a life outside the hospital. Others will never go out. I feel grateful because I got to meet them. They have changed the way I see the world now. They have taught me to be compassionate and to be patient with people and with myself.
When you’re sick, it’s important to speak with someone who really understands your day-to-day struggle. I realized I wasn’t alone – I realized there are many other patients just like me who make up a community. I drew strength from that community, and I try to give strength there, too. I doubt I would’ve been very involved in nonprofit and humanitarian organizations if I hadn’t been sick.
Because I know what it is like to not be able to do what you want when you want. I’m now able to appreciate what I have.
I appreciate when I feel good. I appreciate when I’m able to travel. I appreciate when I’m able to go out with friends. I appreciate when I’m not in pain after a meal. I appreciate how to breathe deeply and enjoy the air, because for 13 years I couldn’t.
I appreciate the little things, things most people take for granted.
I now have an unsurpassed will to thrive. I realized the real value of things in life. I gained wisdom. I’ve learned to embrace uncertainty.
I used to take those things for granted and had a boring everyday life. Before my condition became worse last year, I was living in a stressful city I wanted to leave and had a job I didn’t really like but was easy and pretty well-paid, just because it was a comfortable day-to-day routine. But then, when it got worse, it re-calibrated what was most important in my life, and I made choices. I quit my company job and moved to a new city where everything was new to explore. I enrolled in an art school and in online philosophy courses I thought I never had the time to follow. But I found that time. I had to quit my new full-time job I liked because of my treatments, so I decided to jump out of my comfort zone and create my own business. That way I could work from home, go to the doctor when I needed to and rest when I needed to. I never thought I would have that strength. But I found it. I’ve learned to bounce back.
I would’ve never dared to do all this if I hadn’t been shaken up by my disease.
Being chronically sick profoundly altered my life in ways I didn’t expect, but I wouldn’t change my experience in any way.
Of course, I hope my disease will be cured one day.
Of course, sometimes I wish I wasn’t sick.
Of course, I wouldn’t wish for you to get sick.
Of course, I would have had an easier life if I were healthy.
But I would not be me.
My life would be entirely different than it is today, and I love my life.
I’ve been challenged. Inspired. Encouraged. Driven.
I don’t suffer from chronic Lyme disease. I live with it.
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