Our realities of living with Lyme disease are very different than what those around us see. What we allow others to see is very different from what we really feel. You may see us smiling in photos on social media and out in public. But that may have been all the energy we had for that day, or even that moment. What you see is a happy healthy person. However, on the inside, we are falling apart, our bodies are in extreme pain, and under intense fatigue. We literally feel like we are disintegrating from the inside out.
People with Lyme disease (or any chronic illness) want to stay involved and active. We try to make it to our kids’ ball games, church, school events, or even an occasional night out. We put on our “suck it up” smiles, and do our best to look and feel “normal” for a little while. But we are all quietly and desperately wishing people really knew and understood our honest reality.
This may sound silly to some, but, getting out in public often takes all day to prepare. Most people do not realize that it takes so much energy to mentally and physically prepare for an outing. This involves naps, detoxing, and usually more resting. These outings may take everything out of us. So if you don’t see or hear from us for the next few days, we’re probably recovering, detoxing and sleeping.
Day trip to the lake
My sister invited me to hang out at the lake on a party boat a few weeks ago. It was so nice to get out on the water, and we had a blast together! But, I had to prep for this event for a week. I took extra detox baths, and increased my immune boosters and electrolytes the week of and the week after. When I got home I bathed in antiseptic soap. Why? That sounds crazy, right? Our immune systems are so compromised that we can pick up the most random bacterial infections and parasites. Last Summer I picked up a fun little bacteria from the river that messed up my stomach for months. I’m still not sure if I’ve fully recovered from it. No thanks.
Our reality..
We are burdened with an invisible disease. Some doctors won’t even recognize it. If you live in Texas and have Lyme, you have probably heard, “we don’t have Lyme in Texas”…… Yeahhhhh……… right…. That makes sense, since ticks understand borders, or the birds and deer that help transport them don’t travel…
For my Texas peeps; http://(https://www.txlda.com/wp-content/uploads/2018/02/2018-LYME-MYTHS.pdf)
You quickly learn you must become your own advocate, and do your own research. You will also learn which family members and friends genuinely want to understand. It is unfortunate to learn some of the people you thought were friends, will talk negatively about you and your condition and/or drop you completely . It is heartbreaking, however, you move on and begin to proceed with caution when discussing your health, and learn to refrain from talking about it openly. You learn that many people are selfish and do not wish to hear your “sad story” or endure your exhausting existence. Others will think nothing of your disease and refuse to educate themselves on your behalf.
At home
Life changes in every aspect when you suffer from Lyme disease, or any chronic illness. You figure out who your real friends are, and which people to let go. You realize which family members are more understanding and supportive than others. And some of us learn that the promise, “in sickness and in health,” sounded much better in theory, and you find your marriage deteriorating a little every day.
Working a steady or consistent job becomes increasingly difficult for many of us. Not only does this cause huge financial burdens, but it also deflates our egos and robs us of our dignity. While others look at you and say, “you look fine. Why can’t you just go get a part time job?” It is difficult to answer this question when they don’t see what is happening deep inside your muscles and joints, organs, and brain.
During family prayers or grace before meals, you listen to prayer requests for the loved ones with cancer while you once again get overlooked. Lyme is isolating. It leaves you feeling as though you are treading water, desperately waiting for someone to reach out their hand or throw out a life vest.
Personal growth
Having a chronic disease offers many opportunities for growth. You learn a lot about yourself and the people around you. As well as what relationships are genuine. You begin to grow, adapt and even accept change… Not that you really have a choice! When you remain hopeful, you can begin to realize strengths within you that you may not have realized you possessed. You also begin to look at the world differently. Personally, I have become more open and willing to speak my mind, with way less filter. I don’t have the energy to put up with other peoples petty drama or bullshit. If I wanna say somethin’… I’m just gonna say somethin’…. In our small town there is plenty of high school worthy drama and gossip. I’ll tell ya’ though, once you remove yourself from those people, it is very freeing!
Not only have I learned how much inner strength I really have, but my strength in God has also flourished. Don’t get me wrong, this has been a long journey full of many angry thoughts, and prayers, and plenty of yelling at Him. Many of my prayers were full of doubt and questioning and I was more than willing to argue with Him. However, over the last year I have been able to see more clearly. My anger and animosity have hushed and my hope and faith have blossomed. I can see that God is working through me and wants me to use my trials and suffering to help others. He is using me as a vessel. In my heart, I know he wants me to continue to research, raise awareness and offer hope to others like me.
My Faith will see me through
I’m confident that no matter what happens, everything will be OK. Even if my marriage does not survive. Even if I continue to suffer from Lyme disease, I will overcome. I will remain strong, prayerful and keep my faith in the Lord. If you know me very personally, you know I have moments of doubt, fear, and on occasion, a relapse of suicidal depression. (https://globallymealliance.org/lyme-disease-causing-mental-health-crisis-heres/ ) Nonetheless, these are fleeting moments that may last for a couple of hours or a few days. They are dark and lonely occasions, but I know if I hang on long enough, God will pull me through them. It is not always easy, but on most days I choose to remain positive and full of hope.
My goal
I want to encourage others to keep fighting and to see that there is always light after a storm. But I also want to help loved ones see the realities of the chronic life. It is very hard to live with someone like us. Especially when the bad days are more frequent than the better days. Spouses, family and friends endure so much from us. We are exhausting, rarely feel well, and are often moodier than a pubescent teen girl! But, if you really knew what turmoil was brewing inside us, if you truly understood the science of the battle constantly occurring in our bodies, you may just be able to show a little more compassion. You would be amazed at how a little compassion can help fuel our fight to heal.
Do not allow your loved one to endure this hell alone. Be there for them, support them and remind them it’s going to be ok. Encourage them, be patient with them, and emphasize they are loved. Remind them of their strength and do not give up on them.
Scriptures of hope and endurance
Romans 5:3-5 English Standard Version (ESV): 3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.
James 1:2-3 New English Translation: 2 My brothers and sisters, consider it nothing but joy when you fall into all sorts of trials, 3 because you know that the testing of your faith produces endurance.
Deuteronomy 31:6 New English Translation: 6 “Be strong and courageous! Do not fear or tremble before them, for the Lord your God is the one who is going with you. He will not fail you or abandon you!”
Resources:
Bible Gateway https://www.biblegateway.com
Texas Lyme disease Association https://www.txlda.com/, (https://www.txlda.com/wp-content/uploads/2018/02/2018-LYME-MYTHS.pdf)
Global Lyme Alliance https://globallymealliance.org
