Last Updated on January 2, 2021 by Lori Geurin
This article was originally published on GriefLossHope.com, a website dedicated to sharing stories of grief and loss and giving hope and encouragement to help people who are coping with chronic illness.
Having a chronic illness can impact your life in countless ways. The life you knew before your illness may seem like a distant memory, especially when you’re dealing with many symptoms and concerns.
You could be in constant pain and unable to get a good night’s sleep. You might have to quit your job and suffer financial problems.
Your appearance may change. Or you may look the same, making it even harder to explain your illness to the outside world. This is where the term “invisible illness” comes from.
Your interpersonal relationships can change, when suddenly your spouse or loved one takes on the role of caregiver.
All these changes can cause stress and strong feelings of anxiety, fear and anger. Many people feel a lack of control and uncertainty about the future. And these feelings are very normal.
According to the U.S. National Center for Health Statistics, a chronic disease lasts more than 3 months, cannot be prevented by a vaccine or cured by medicine, and does not disappear.
I”ve learned first hand what it’s like to have a chronic illness, beginning in the spring of 2012 and I share my experience with you below followed by 7 tips to help you cope with chronic illness.
My Journey From Health To Chronic Illness
Before the illness I was strong, healthy and active. I was a wife to my wonderful husband, mom to four amazing kids, teaching Special Education full-time at a local public school.
But, then I was bitten by 2 tiny ticks and everything changed.
I initially became so sick with a mind-numbing headache, dizziness, crippling nausea and vomiting that I was in bed several days trying to recover. I was so weak I could barely walk. My coloring was pale and ashen. It felt like the worst case of the flu I’d ever experienced. I was so out of it that I don’t remember much from those few days.
When I had recovered enough to go to the doctor I asked him about Lyme disease. At that time I didn’t know much about it, other than it was a tick-borne disease.
The doctor asked if I’d traveled to the northeastern United States, but the furthest I’d been that direction was North Carolina. He then told me, “You can’t get Lyme disease in Missouri”. He said I had “tick fever”.
Tests were not ordered. Prescriptions were not written.
The doctor told me it would take time, that I would feel better eventually. Unfortunately, this never happened.
I became worse. Much, much worse.
Waiting And Hoping To Feel Better
But in the months between the tick bites and my eventual Lyme disease diagnosis (18 months later), I felt like I had the flu nearly every day.
As a teacher, I was around children all day. Inevitably, I came into contact with many germs every day. I was exposed to many illnesses over the years due to having four children of our own. And I never remember being sick much. In fact, my resistance to illness had always been strong.
So I initially thought perhaps I was getting sick a lot due to exposure to all the germs I came into contact with. I usually just pushed through my illness knowing my family and students were depending on me. I figured I’d improve with time.
But, as the weeks and months passed, I began to experience other alarming symptoms I couldn’t ignore. An unrelenting pain began coursing throughout my entire body. The pain was so strong and constant I couldn’t sleep.
I felt exhausted all the time, had trouble breathing, and experienced frequent intense migraines.
Lethargy and extreme weakness became the norm.
I developed a heart murmur and had frequent heart palpitations, even while lying in bed.
I was becoming sicker by the day and my physically less able to fight through the pain.
Memory Problems And Heart Issues
Then I started forgetting things and stumbling for the words I wanted to say. The brain fog was so great at times it was starting to worry me.
Did I have (very) early onset Alzheimer’s? What was happening to me, I wondered.
I was driving one morning and came upon a traffic light feeling confused. As I sat at the intersection for a few seconds, I struggled to remember whether the green or red light meant to stop or go. The driver behind me showed frustration with my indecision. He started honking for me to go.
In the past this would never have happened to me. It was scary knowing something was terribly wrong and not knowing what to do about it.
Also, I recall getting lost a few times when I was driving. And I started calling our children and friends by the wrong names. I had difficulty focusing and my teaching job became extremely challenging. I eventually so ill that I could barely get out of bed for weeks at a time and sadly had to resign from my job.
During the 18 months leading up to my diagnosis, I went to multiple doctors, including several specialists. They gave me a variety of tests and countless blood work all to figure out what was wrong with me. I was placed in a Holter monitor for 36 hours to test for heart problems.
My doctor ordered months of Physical Therapy due to muscle weakness and wasting. I’d lost 20 pounds in a short time for no clear reason. My doctor and Physical Therapist expressed concerns about Multiple Sclerosis. Thankfully, I was tested and MS was ruled out.
Searching For Answers
I was diagnosed eventually with multiple chronic and autoimmune conditions including:
- Sjogren’s syndrome
- Myofascial pain syndrome
- Chronic Fatigue Syndrome
- Mixed Connective Tissue Disease
- Tularemia (another tick-borne illness)
I had multiple allergic reactions to a variety of foods, ran a fever nearly every day and would get hives and strange rashes on my face, neck and torso (where the tick bites occurred).
I developed mild dyslexia for a time and had difficulty reading numbers. As an avid reader, I became frustrated when reading a text.
Around the same time, I started having twitching and tremors in my hands, arms, legs and abdomen.
Getting To The Root Of The Problem
I recall one time when I had been bedridden for several days, running a high fever and missing several days of work. I could barely walk anymore without extreme effort and felt as though I was dying.
And I didn’t understand why all this was happening. I had always been so healthy before the tick bites.
I wanted to learn the root cause of my illness. But each time I went to the doctor, it seemed like they only wanted to treat my myriad of symptoms. It was incredibly frustrating.
But I knew everything had to be related to the tick bites. And I persisted in sharing this with my doctors until they listened and gave me the recommended tests. Unfortunately, it took them so long to test, diagnose and treat me that by that time the Lyme had set into many of my body’s organs and systems, wrecking havoc throughout my immune system.
My body was warring against itself.
Psychological Stages Of Chronic Pain And Illness
According to Jennifer Martin, PsyD, there are Seven Psychological Stages of Chronic Pain and Illness:
- Pleading, Bargaining and Desperation
- Anxiety and Depression
- Loss of Self and Confusion
- Re-evaluation of Life, Roles and Goals
I found myself going through these stages, sometimes between two or three at a time.
If you or your loved ones have a chronic disease you’re probably familiar with these stages too.
At this point, the struggle had been so long and difficult and my body was barely hanging on. I started losing hope in ever finding out what was wrong with me.
And I began questioning God.
I asked Him, “God, if you truly love me then why is this happening to me and my family?” I felt confused, angry and forgotten.
Of course this came after much faith-filled praying for healing and comfort.
I’m humbled to admit I reached this low point in my life’s journey. I never would have predicted that I’d one day question the very existence of the God I’d believed in and loved as long as I could remember.
Nevertheless, it’s part of my story, and I want to be real with you about it. Maybe you’ll be able to relate to something you read here?
Facing my health crisis tested my limits. And I was confronted with my mortality many times.
I now believe God was testing my faith throughout my illness. Sometimes I kept my eyes on Him, and sometimes I was stubborn and went my own way.
Isn’t it amazing how we can learn so much from the past, but when we’re living in the moment it isn’t always that clear? At least this has been my experience.
He Was With Me All Along
Lately, God is showing me how He was there for me, even when I was living through the most painful days.
I see how He was with me every step of the way when I was crying out to Him for help and healing — and even when it seemed like God was being silent.
As God reveals Himself to me I see now that part of my story is a renewed faith in Him and hope for His plans for my future.
One of my favorite verses I’ve leaned on throughout this time is, “Be strong and courageous. Do not be afraid or terrified because of them (or what you’re going through), for the LORD your God goes with you; He will never leave you nor forsake you (emphasis mine)” (Deuteronomy 31:6).
I hope it brings you comfort and hope as it has me.
I’m so thankful He promised, “He will never leave you nor forsake you”.
I love what Jon Bloom says about our human perceptions:
“And when we feel forsaken by God we are not forsaken (Hebrews 13:5). We are simply called to trust the promise more than the perception.”
In the midst of the trials, and despite His faithfulness to me and our family, I often felt alone. I learned this is common for people confronting chronic pain or illness.
I believe God is showing me the meaning of “Take up your cross and follow me…(no matter what) (emphasis mine)” (Matthew 16:24).
I may be a slow learner, but I’m so thankful for His grace and patience with me through it all. And I’m looking forward to what He’s going to do in the coming years.
He continues to bring beauty from ashes in my life and I know He can do it in your life too.
My illness has taught me to take time to slow down (although this is still a challenge for this fast-paced girl). I’m learning to refocus my priorities. For me, this includes prayer and having real, meaningful conversations with the people I love.
I hope you will learn from my mistakes and be encouraged in whatever challenges you experience in life.
Now, on to the tips…
7 Tips For Coping With Chronic Illness
1. Educate Yourself
Read, study and learn as much as you can about your condition or disease. Don’t depend on physicians to do it for you. While doctors are highly trained professionals, please conduct your own research before believing everything you hear.
I’m pleased with the team of doctors who are currently managing my medical care and treatment. If you aren’t happy with the level of care you receive consider getting a second opinion or switching doctors.
Before I have an appointment I make a list of questions to ask the doctor. This helps me be more efficient, prioritizing my essential questions first to make sure they’re addressed.
Do your own research, reading as much information as you can about your illness. Try to find knowledgeable people to talk to about your specific condition.
2. Express Gratitude
Say “thank you” to your loved ones, friends, and family. Being chronically ill isn’t easy for them either, especially if they are taking on more responsibility.
My dear husband has helped take our children to multiple practices and events. This is in addition to his full-time job as a High School Principal. It is difficult for him to see me sick. But he cares for me throughout my most difficult days. I’m forever grateful to him for his love and support.
In addition to expressing gratitude to others, I recommend keeping a Gratitude Journal. I try to jot down one or two things I’m thankful for.
Sometimes I’ll write a favorite verse, Motivational Quote or Power Phrase. I can come back later and read what I’ve written for encouragement and reflection.
3. Do Not Let Your Illness Define You!
You can take charge and manage your disease instead of letting it define you. In the midst of chronic illness, do not lose your identity.
Face your fears.
Take one day at a time.
Don’t give in to the temptation to have a pity party. Instead, reframe your negative thoughts. Don’t let your thoughts control you.
Think of a way to help someone else, even if you are bedridden. Maybe you could text or call an old friend or loved one who is facing their own crisis. Strive to be an encouragement to others.
Keep moving forward.
4. Give Yourself Grace
A wise friend gave me this advice when I was in the throes of my Lyme battle. I was trying to keep up with my duties as a wife, mom, daughter and friend. But it was not possible for me to maintain the level of commitment I’d been accustomed to before.
I had to learn to give myself grace. When feelings of guilt would creep in (because I was not able to do many of the things I did when I was healthy) I had to remind myself of this.
I had to find a new normal.
Releasing myself from the pressure of being a do-it-all wife and mom allows me to focus on what’s really important.
5. Make Healthy Choices
Follow a healthy diet, such as a Paleo eating plan. Eat plenty of fresh fruits and vegetables. Avoid processed foods. If necessary, lose weight.
Consider using essential oils as a natural treatment for pain and insomnia. Learn how coconut oil, apple cider vinegar, and other natural ingredients can help improve your health.
Look into intermittent fasting and find out if it might help you with symptoms.
Related: The Top 5 Paleo Mistakes You MUST Avoid
6. Be An Advocate For Your Health
This is one of the most essential things I’ve learned. When I was going through the most serious, painful time of my illness no one could tell me what was going on.
The doctors and specialists gave me multiple prescriptions (many of which I never took due to all the side effects). One doctor suggested watching a video about walking. They told me to get a massage, get more rest, eat a gluten-free diet etc.
While they meant well, their suggestions didn’t address the root cause of my illness.
Thankfully, (albeit 18 months later) I tested positive for Lyme disease and other tick-borne illness co-infections.
I say thankfully because this was the turning point in my illness.
We were relieved to have an explanation of why my body was deteriorating. Even though no one wants to hear they have a chronic illness, we finally knew what we were dealing with. And that helped bring peace and change to the situation.
7. Seek Support
Building a support system is vital. Talking with supportive family and close friends can help. You might consider joining a support group or message board where people who have the same condition share experiences and hopes for the future.
I have met so many people who have Lyme disease. We communicate through the blog, Facebook, email, and talking on the phone. We share our progress and treatments that have helped and we encourage each other.
Summary – Coping With Chronic Illness
If you’ve made it this far congratulations on finishing this super long post on coping with chronic illness! I hope you’ve enjoyed reading and have found value and support here. Whether you or a family member have a chronic illness there are many positive steps you can take to help deal with the inevitable changes.
Understanding that people who have chronic illness go through several psychological stages can further help you and your loved ones provide (and receive) love and support. We all need supportive care at times in our lives and going through these experiences can better equip you to help other people in the future.
Can you relate to any of the Psychological Stages Of Chronic Illness And Pain? What tips can you add to this list?
Please leave your comments below. I’d love to hear from you!
If you’d like to learn more about coping with chronic illness you may want to read:
- The Shocking Truth About Forgiveness And Your Health
- How To Sleep Better With Chronic Back Pain
- Overcoming The Shame Of Chronic Illness
- 21 Simple Strategies To Fight Lyme Disease Naturally
- The Ultimate Gift Guide For People With Chronic Illness
Also, you may want to read about The Spoon Theory in Chronic Illness: What’s A Spoonie Anyway?
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