How do you know what is real?
To quote the Matrix "If real is what you can feel, smell, taste and see, then 'real' is simply electrical signals interpreted by your brain."
I love to be the centre of attention. I love birthdays and praise and admiration. Being affirmed and words of encouragement are definitely a love language for me.
Children need attention. They spell love, T-I-M-E. They need their parent's love, support, understanding, guidance, and encouragement. When they don't get this kind of positive attention, all that's left is negative attention, and I jumped on that bandwagon pretty early.
At birth, I was born with eye problems that required a lot of doctor's appointments, surgeries and comfort. As I grew older and puberty began to hit, other things came up. Joint pain, strange rashes, recurrent infections, exhaustion, migraines, memory issues and more. It didn't take long in my childhood for me to clue in that when I was in a health crisis, I got attention.
My parents loved me and my brother. They worked hard to give us a comfortable place to live and did their best to give us the time and attention we needed, but life doesn't always happen the way we hope. Working as a full time RN, my mom wasn't around very much and my dad worked a lot too. When they changed jobs and became involved in full time camp ministry, things really changed. It was a 24/7 lifestyle. Our house was onsite and for 5 years, I saw more of the staff than my parents. I'm not laying blame. There has since been so much growth, understanding and reconciliation on both our parts and forgiveness is so powerful.
During that time, I felt more alone than ever. Don't get me wrong, there were great times too and fun memories of camp life that I'll always treasure. But I wasn't parented very much. I grew and tried to figure things out for myself, and I got a lot of things wrong. When my new health problems began to arise, it was like I was finally being noticed again. My parents swarmed around me like flies as we tried to figure out what was going on. From the paediatrician, to the allergist, to the immunologist to the infectious disease specialist. The list went on. No-one really had an answer. Blood tests were positive for some things and negative for others. Symptoms would come and fade and come again. I started to wrestle with this concept of "sickness gets me attention, but this is not fun and I want it to stop." I battled that a lot.
As a preteen and into my teen years I was a drama queen. I completely admit it. I would ham up a situation, or exaggerate a story quite frequently. I'm not proud of my past but am so grateful for God's grace. I poured my heart out to Him long ago about my lies (because they were in fact lies) and my manipulative behaviour. Jesus' blood has washed me clean and I'm so thankful I can lay it all at His feet.
Sometimes it was hard for me and people around me, because they knew I liked to dramatize things but I also had some very real and scary physical symptoms happening. So what was real? We battled for years looking for answers and each doctor seemed to have their own opinion and treatment. Looking back, I know there were some friends and even family who thought I was just hamming it up again, and I couldn't blame them. I had blown the trust on that but I knew these things were real. I have pictures of me at around age 15 with a rash covering my whole body. My eyes were swollen shut, my joints so inflamed that it was hard to hold a pencil. And this went on for months, then years. After high school, things really started to slide downhill. I was sick ALL the time. I would catch a cold and it would turn into pneumonia. I was in the hospital getting IV antibiotics regularly for infection after infection. I couldn't keep food down and my joint pain was so bad, I barely moved. I was scared.
My parents and I finally had enough of fighting for answers and decided to act on one doctor's advice. At Sick Kid's immunology department, one doctor suggested I might have Lyme Disease. I had most of the symptoms and I had lived at a camp, so the pieces fit. Trouble is, Canada at the time didn't take treatment for Lyme very seriously. The doctor gave me 30 days of oral antibiotics and said that should cure it. Well it didn't. We decided to do our own research and remembered that we knew a girl who had Lyme. She required extensive treatment that the US was using on Lyme patients and it seemed to work. So we contacted a specialist in Buffalo and took a leap of faith. For 3 months, we drove there daily to have my blood removed and oxygenated, IV antibiotics, physical therapy and be in a hyperbaric chamber. My diet and lifestyle was totally changed and you know what? I started to get better.
I am so incredibly thankful for Canada's free healthcare system. It's not perfect but I'm so grateful I can be admitted to hospital and know I won't come home to a $15,000 medical bill. This treatment I was getting however, was even more expensive than that. My parents did all they could to pay for this treatment as long as possible but we finally had to stop because it was just too much.
I remember being with a 14 year old girl at the clinic in Buffalo. Her family lived in Ontario as well, and the parents took out a second mortgage on their home to give their daughter this treatment. She was almost completely paralyzed from Lyme Disease when she first came to the clinic and it was a privilege to see her begin to walk again as treatment went on.
Being in Buffalo and doing that treatment really seemed to do the trick. I had life to me again, energy and eagerness to actually move forward, and for about a year that's what I did. I wish I could say that was the end of my health problem journey, but it wasn't. Familiar symptoms began creeping back up, and new ones started. We felt like we were right back where we started.
Looking back, I know that wasn't true. We went through a tremendous amount during those years but we learned a lot. My parents and I grew together during that time. We discovered a lot of the brokenness in our relationship and were able to repent and seek forgiveness from each other. We started to heal from old wounds that happened before and during the camp years. I was able to confess my brokenness and sins I committed as a teen and young adult, and I was able to mature from a drama queen to something more. It was the during this time that Jesus began to pull on my heart. Slowly stripping away the legalism and false religion I was stuck in.
It was the first of many lessons in knowing my true identity. Not as a lonely little girl, a dramatic teenager, a victim, and not as a sick person. God began to show me, I am His and He defined me.
I'm still learning that lesson today. I'm constantly being reminded of who I am in Christ and I need those reminders daily. Those strongholds started in childhood aren't easy to break but God is faithful and full of grace.
A couple years later I was diagnosed with Lupus, Common Variable Immune Deficiency, and Hemiplegic Migraine Condition. Three big diagnosises. I finally got the label we had searched for to put with all the symptoms. After all the years we finally had our answers, but you know what? It didn't matter as much anymore.
For years I NEEDED a diagnosis. A diagnosis would prove I wasn't faking, that it was real. I thought it was the answer. True, I now have the treatment I need and the proper tools to manage my illnesses, and that has been a big blessing, but I didn't need the diagnosis for the reasons I thought I did.
Being honest, 100% honest isn't easy, and trying to be completely in-tune with your body in that way is even trickier for me. So what is real? What's real is that I'm a child of God who sinned by using illness to get the attention I craved. What's real is that I'm forgiven. What's real is that my body has limits, big ones that do exist. And what's real is that neither the sin nor the illness defines me, God does.
Author - Erin
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.