When you receive a “chronic” illness diagnosis of any sort, a cloud of discouragement can so easily hover over you. An illness that has no end in sight? This can be daunting.
When I was diagnosed with Chronic Lyme Disease seven years ago, I was completely overwhelmed by what was happening to my mind and body. It was at times, difficult to put into words. And until a few months ago, I didn’t.
In my worst days with Lyme, I didn’t think I would ever see better days. Ever. I felt so far gone. There was a lot of fear. But seven years later, even though I still have some symptoms, I am doing well.
So if you or someone you love has been diagnosed with Chronic Lyme Disease or any difficult, complicated illness, I want to encourage you, you are not alone. I know how challenging this is, yet I believe, nothing is completely hopeless and there are ways to find some balance again in the confusion.
I am not a medical doctor, so please know this is not medical advice. I just want to share some perspectives that have greatly helped me.
1. Simplify your illness and fight the fear.
Chronic illness can be so complicated. With Chronic Lyme Disease, symptoms can be unbelievably distressing. Treatment choices are even more so. Because of this, fear has a way of taking over even the most courageous of souls.
After my diagnosis, I soon discovered that there were a lot of differing opinions on Chronic Lyme – everything from it’s a purely bacterial infection only managed by high doses of antibiotics to less clear origins like impaired detox pathways. I came away, time and time again, more confused and scared than I was before.
A year ago, I began seeing a chiropractor and nutritionist who reminded me that the way to overcome an illness, is to simplify it. “You are not a deep, dark mystery,” he would remind me at each visit. I began to listen to my body more closely and ask this question, “What does my body really need to get well, in the simplest and fewest of terms?” The same needs came up over and over – detoxification, reducing inflammation through diet, resting and healing my autonomic nervous system, caring for my adrenals with herbals, and strengthening my immune system. Essentially, above all, my body needed – and still needs – major TLC to have a fighting chance to become healthy again.
I encourage you to ask yourself the same question, “To start, what does my body really need to get well, in the simplest and fewest of terms?” Then listen to your body closely, consider what your symptoms are communicating, and try to see your illness not as a deep dark fearful mystery (no matter how complicated and impossible it may actually be), but as something that can be overcome or managed, one simple step at a time.
2. Be persistent.
With an illness like Lyme, you will understandably want to give up a thousand times – but yet it may take a thousand and one tries to see the light of day. Continue doing all you can to do the best for your body – eat well, exercise if possible, take deep breaths, stick to your chosen protocol (as long as you think it is not harming you), and find the medical and emotional support you need. Always do something everyday to nourish and build up your body. Be vigilant about rest and knowing your limits each day. Persistence pays off.
3. Be flexible.
Everyone has their own version of chronic illness. With Chronic Lyme, this means some respond to long term antibiotics, others get better through alternative antimicrobial and supplemental treatments, and some, like me, end up using both. Decide with a trusted health professional what is best for you, persist in it, yet be open to a different route if the one you’re on is harming you in any way. You’ll know. I saw a Lyme Literate Medical Doctor and a Lyme Literate Naturopath, which I think is a safe place to start, but I also sought out the help of traditional and alternative practitioners. Sometimes I was given conflicting information and some doctors discounted the Lyme diagnosis altogether, but thankfully, I began to see that different insights, Lyme and non-Lyme related, helped me to keep a balanced perspective when I was tempted to think in extremes.
4. More is not more.
At the start of Lyme treatment, it is common for someone to be on an impressive number of medications and supplements. At one point, one specialist wanted me on antibiotics plus twenty-five other different herbs and supplements. Looking back, I would have started more simply, slowly, keeping in mind the importance of nourishing and building my body up before trying to aggressively deal with the chronic infection. In my experience, I honestly think the problem is often taking too much of everything rather than not taking enough. Remember your body (your liver) has to process everything you put in it. That takes energy. I was hesitant to do it, but when I pared-down what I was taking to the absolute necessities, it was much more manageable … and over time, I have needed less and less.
5. Remember grace in your relationships.
Chronic illness can be a frustrating factor for even the best of relationships. So be gracious to those who are trying their best to care for you even if they won’t be able to “get” your illness all the time. Be gracious also to the doctors who question you because they have never heard of Lyme being “chronic” in medical school, and to the person whose words fall short to encourage. Forgive even the one who doesn’t believe the extent of your pain. Some will not be able to see beyond their experience, and honestly, everyone is a little broken in their own way. I can’t say this enough, but stress and bitterness do so much harm to your body, mind and spirit – so remember the grace given you, and decide to give it out.
6. Remember to set small goals.
It is very difficult, but accept your body’s limitations for the moment and do not compare your life with someone else’s. Pace yourself throughout the day, but be sure to find small things you can accomplish that are meaningful for you – one email to someone, one phone call, one trip out, one meal made. Keep a list of them. Look at it often.
7. Find a glorious distraction and do something that you love.
Understandably, chronic illness has a way of taking over every aspect of your life. As impossible as it sounds, find something you love to do that you can still do, a glorious distraction, if you will. Any way you can do it, make room in your mind for beauty, happiness, creativity.
For me, I started to write again. I couldn’t even think about writing two years ago (I could barely sit up and string any thoughts together). But once I began to feel slightly stronger, I started to feebly clack away at the computer. It was hard for many months, but then I rekindled my love for it … and in a small way, I felt like my old self. It motivated me, distracted me, and actually became very cathartic and healing.
8. Let go of linear recovery.
Sometimes recovery is extremely unpredictable. Your best day yet could follow your worst day. And unfortunately, you can have an off day after many stronger days. I got very discouraged with this! It helped so much once I “expected” unpredictability and reminded myself to take every up and down in stride.
9. See your situation through God’s love.
Suffering is hard to understand. But I encourage you to consider reaching out to God in your pain even when your heart is still questioning. I believe He is there for you. Just come as you are. I know for myself, I would not have made it through without God’s presence in my life and the gospel of grace that secures my future, no matter what. Remember, simply, God loves you. See your situation through His love … it may not be easy, but through Him, all things are possible, and beauty often rises from the ashes. So wait. Hold on. Hold on to His hand and trust Him. This will fight the fear.
10. Reach out to others.
Connect with others. Hear their story. Share yours. Let your suffering connect you rather than disconnect you from others. In fact, being broken and yet still having the courage to reach out makes people listen. There is so much healing in extending your shaky, weak, aching arms out to others. I assure you, as hard as this journey is, you will be privileged to meet some beautiful people along the way. I know if I had stayed to myself (which I wanted to do), I would have missed so many blessings.
May you find strength, hope and healing today! Don’t give up.