30+ Lessons Life with Chronic Illness Can Teach You

30+ Lessons Life with Chronic Illness Can Teach You

Are you struggling with a chronic or invisible illness? I am sure it has been quite the learning experience! I was just sitting on the couch reflecting on all of the things I’ve learned over the past two years and thought I’d share them with you.  I hope that they are an encouragement to you!

Many of these lessons are things I am still learning…I don’t know about you, but I often have to make the same mistake multiple times before I finally get it!

30+ Lessons Life With Chronic Illness Can Teach You

  1. Don’t change more than one thing at a time.  I don’t know about you, but I’ve been guilty of adding multiple new supplements while trying something different with my diet and detox and then having no clue what helped and what didn’t.  Brilliant.  Take my advice: Be patient.
  2. Don’t go on a bender when you are feeling good.  There may be periods of time where you will feel great and be tempted to relax on your healthy lifestyle.  This may include eating unhealthy food, staying up too late, or pushing yourself too hard. You’ve worked too hard to get stable or into remission and going on a bender is the fastest way to relapse.  Trust me.  A few months ago, I went on a bender involving coffee and sourdough bread.  I am still paying the price!
  3. Don’t try to live the life you once lived and do the things you once did.  This one has been really hard for me.  Before getting sick, I was running my own successful hair and make-up business, raising two kids, running a home, and staying up late to tackle endless decorating projects. I loved it.  I have mourned the loss of my old life so many times, but it’s really not profitable to do so.  My mentor/counselor has lovingly told me that my illness is no surprise to God and He is there to equip and strengthen me for this season of life.  I have to find my new normal and what He is calling me to do now.
  4. You might have to take two steps forward and one step back.  I don’t know if this has been your experience, but it has surely been mine!! Just keep in mind to not get too upset when you take those steps back.  Chances are, it’s just a low point and things will turn back around.  Focus on rest, hydration, an anti-inflammatory diet, and gentle detox.  A low point can also mean that it’s time to change the course of your treatment. Pray about your next steps.
  5. 30+ lessons life with chronic illness can teach you // This House of JoyKeep a journal to track food, symptoms, etc.  I have been so guilty of not keeping proper records! If you really want to know how your food, supplements, environment, and activity level are affecting you, you have to take notes.  This way, you can see patterns developing or find out if you have a food or environmental trigger to some of your symptoms or if that new supplement you are trying out is doing anything.
  6. Get copies of all of your medical records, lab results etc.  I can’t stress this highly enough.  I can’t tell you how many times I have referenced my lab results when researching various conditions and comparing notes with others.  You can do an internet search of each part of your labs to get a clearer understanding of what is going on in your body.
  7. What works for one person may not work for someone else.  You may have friends that swear by a Paleo diet or the GAPS diet or doing a particular doctor’s protocol but you have to find out what works for your body.  I tried the Paleo diet when I first started going downhill because everyone raved about how great they felt on it.  I didn’t have that experience and it was quite discouraging.  It turns out, I was allergic to many of the Paleo diet’s staple foods and I had to find a way to calm down the inflammation in my body and heal my gut.  {Check out Praise Report: One Year into our Journey with Healing Foods}  A friend of mine had great success with a particular doctor, while I had a terrible experience.  Another friend of mine read about a woman who cured her lyme with raw milk, so she tried it.  It made her so sick!
  8. 30+ Things life with chronic illness can teach you.  // This House of JoyDo your own research, don’t just rely on doctors to tell you what to do.  Who cares more about you? You or your doctor? Who has more time to find out what is specifically going on in your body? You or your doctor? Doctors are a wonderful asset, but they are dealing with so many patients each day, they can’t possibly do the all of the research specific to your body.  You owe it to yourself to fully understand your condition and look at all treatment options.  Be an advocate for your own health and work WITH your doctor to get to the bottom of your health issues.  Don’t be afraid to bring them the latest research or protocols you hear about.
  9. Don’t believe everything you read on the internet.  Since I just told you to do your own research, I had to include this one.  I don’t even want to know how many hours I have spent researching and trying to figure out how to heal my body.  One thing I do know is that there is WAY too much information out there and it’s hard to filter what is sound and what isn’t.  Use discernment and find sources you trust.  Look for sources that are backed by scientific research, but don’t discount personal testimonies you read either.  Testimonies definitely have their place and can be quite encouraging.
  10.  Start where you are.  It can be quite overwhelming to receive a diagnosis of Lyme or an autoimmune disease.  The more you read, the more overwhelmed you may become.  My friend Shannon Quintana uses the phrase “Start where you are” in her music and speaking ministry, and I think it’s wise advice for anyone.  You’re not going to know everything right off the bat.  It takes doctors years to gain the knowledge they need to treat their patients.  It will take you quite a while to learn what you need to know as well.  {Check out 5 Baby Steps to Wellness for good starting points}.

    Start where you are. 30+ Things Life With Chronic Illness Can Teach You.  // This House of Joy

  11. Don’t be afraid to tell your doctor when something isn’t working.  Doctors need feedback on the treatments they are recommending to their patients.  Chances are, if you are reacting poorly to something, someone else is as well.  If your doctor notices a pattern, they will be forced to dig deeper and seek alternatives.
  12. Work with professionals who aren’t afraid to change their protocols to reflect the newest research. New data is constantly coming out about stealth pathogens, MTHFR, EMF/EMR radiation, environmental toxicity, etc.  Make sure your doctor is in the know!
  13. Have a support system in place for the times you really crash.  This may mean stashing away some freezer meals, asking friends to help out with your children or house cleaning if you are bed-ridden, etc. Have some great novels on hand as well as a playlist of music to lift your spirits.  I also highly recommend keeping a list of (and memorizing) scriptures and quotes that give you encouragement in your low periods.
  14. Make sure your spouse is up-to-date with your health issues and has done the necessary research to understand what you are going through.  This will help them be more understanding and assist you in deciding which treatments to pursue in the future.  Life is hectic, so make sure you set aside time for this.
  15. Be intentional.  30+ Things Life with Chronic Illness can teach you.  // This House of JoyBe intentional about showing your spouse you love and appreciate them even when you are not feeling well.  Long seasons of illness can be hard on a marriage.  Your relationship may not look like it once did, but work together to find your new normal.  There may be times when all you can think of is going to bed when your spouse gets home and takes over with the kids…but make sure you make them a priority.  It’s all in the little things.  My husband has communicated it’s as simple as a hug when he walks in the door and words of affirmation for the things he does around the house to help me.  Find out what is important to your spouse and what works for your marriage.
  16. If you are having trouble getting to the bottom of your illness, consider checking your home for mold and getting tested for lyme, MTHFR gene mutations, and heavy metal toxicity, as well as having your dental health evaluated by a biologic dentist.  If you have mercury amalgams or root canals, you may not get better until you get them squared away.  I know I have one MTHFR gene mutation, but am considering doing the 23andme gene panel to see if there are any others I need to be aware of.  In addition, I plan to work with a biologic dentist as soon as I can afford it to figure out what to do about my root canal.
  17. Don’t just order the latest supplement because it’s working for everyone else.  Some people don’t absorb nutrients because their bodies are too sick and will basically be throwing their supplements down the toilet.  Others may be taking too many things that don’t work well together.  Some probiotics can cause a massive healing crisis. (Ahem, this has happened to me so many times!) Work with a holistic practitioner to balance your body with the exact nutrients your body is calling for.  What works for me may not work for you, and vice versa.
  18. 30+ lessons learned from chronic illness // This House of JoyLaugh.  A lot.  It is truly the best medicine.  Surround yourself with friends and family who love to laugh and you’ll forget (even if just for a few moments) that you are ill.  If you like stand-up comedy, Jim Gaffigan and Michael Jr always make me laugh until I cry :)
  19. Keep a running list of things you are thankful for and refer to it often.  Keep your mind focused on the positives rather than dwelling on the negatives.  Check out the book 1000 Gifts and the work of Ann Voskamp for inspiration.
  20. Try not to dwell on the past.  I have spent too much time wishing I hadn’t had this vaccine or that dental procedure.  The truth is, I can’t change those now, can I?! Say it with me, “Do the best you can until you know better, then when you know better, do better.” Thank you, Maya Angelou.  I need to get that tattooed on my forehead!
  21. 30+ lessons life with chronic illness can teach you.  // This House of JoyNever underestimate the power of a nutrient-dense diet.  We have seen TONS of improvement in our home from switching to healing foods such as kefir, yogurt, fermented veggies, organic produce, and pastured meat and dairy.  Good in, good out.
  22. Not all supplements are created the same.  Look out for unwanted excipients.  {Check out What’s Lurking in Your Supplements and 7 Tips For Choosing Clean Nutritional Supplements for more information}.
  23. Sometimes, you’re going to feel worse before you feel better.  This is especially true for those treating Lyme and co-infections.  There are times when you will react poorly to a new regimen and it’s only a temporary detox reaction (aka “die-off reaction” or “herx”).  Do yourself a favor and learn how to combat herxheimer reactions and go slow with any new treatment.  Always call your doctor if you have a bad reaction.  You may need to take a few days off to rest your body.
  24. Join a Facebook support group (or 10!).  I joined groups for Lyme, MTHFR, the GAPS diet, etc. and have learned so much from other people.  Private groups are a great place to ask questions, help others, and know that you are not alone.  You can also follow bloggers that share common interests and struggles and interact via blog comments and Facebook.  I’d love to get to know you at This House of Joy’s Facebook community.  It’s a safe place to talk about various health, diet, and lifestyle topics.
  25. Your true friends will stick with you.  They will love you even when all you can do is sit and chat and even when you can’t get together because you are just too ill to leave the house.  They will check in with you and ask if you need prayer.  They will offer to come over and help you clean or run errands for you.  They will laugh and cry with you.  They will understand that even though you look normal on the outside, your body is in pain and you are extremely fatigued.
  26. 30+ Lessons Learned from Life with Chronic Illness // This House of JoyDon’t worry about the future.  Stress and worry are not going to help the situation.  Again, make yourself a list of scriptures and quotes about worry.  Memorize them and recite them to yourself when you find yourself falling into a state of worry.
  27. Some friends and family won’t understand what you are going through (especially when you look the same on the outside).  If they are close friends and family, do your best to educate them (if they are willing to listen).  The Spoon Theory is great to share if you struggle with extreme fatigue.
  28. Sometimes, you are going to have to pass on fun activities.  This is hard, I know.  But, if a jam-packed weekend with friends and extended family is going to wipe you out for an entire week, you are going to have to choose your activities carefully.  Prioritize.
  29. Trust your instincts.  If you have a bad feeling about a doctor or health practitioner or you don’t feel comfortable with a certain treatment, follow your instincts.  They are probably right! I had a bad feeling about a certain doctor and tried to ignore it because she came so highly recommended by a friend.  (And I was desperate to get well!)  I spend way too much money and found out that I didn’t agree with the way she practiced medicine.  I also instinctively knew I did not want to do long-term antibiotics for lyme.  I still believe I made the right choice on that one.
  30. 30+ Lessons Life with chronic illness can teach you // This House of JoyRead great (inspiring!) biographies.  Reading about the lives, struggles, and victories of others really puts life into perspective.  I highly recommend Joni & Ken: An Untold Love Story, Unbroken: A WWII Story of Survival, Resilience, and Redemption, Fearless: The Undaunted Courage and Ultimate Sacrifice of SEAL Team Six Operator Adam Brown, Seal of God, The Hiding Place, Tramp for the Lord, and Undaunted: One Man’s Real Life Journey from Unspeakable Memories to Unbelievable Grace.  You’ll notice there are multiple Navy SEAL/military books in my list.  My dad is ex-military and has often talked to me about the concept of “mind over matter”.  There is definitely something to be said for that, as you will see if you read those books.  The story of Louis Zamperini was especially impactful to me because I often feel like such a wimp.  The fact that he endured what he did mentally and physically and lived until he was 97 is nothing short of a miracle.  I can’t wait to see the movie in December!  If you have any great biographies to recommend, please let me know in the comments!
  31. Write things down.  Has your memory suffered due to your condition? Mine sure has! I have learned that if I don’t write it down, I will most likely not remember it!
  32. Don’t compare yourself to others.  It’s so easy to look at what others are doing or can do and get discouraged.  (Especially if you spend any amount of time on Facebook or Pinterest!) Just today, my husband listed the things he appreciated about me in our counseling session (not the old me, but the current me).  I have to say, I was completely surprised at his list.  My counselor made sure that I understood that he appreciates and loves me as I am now and I am a blessing to him as I am now.  That was huge! You are worthwhile just as you are and you have a specific purpose and calling just as you are.  You are worthy to be loved and cherished, sickness and all.  Don’t fall into the trap of feeling like a burden to your friends and family.
  33. 30+ Lessons that Living With Chronic Illness Can Teach You // This House of JoyYour home may not be as clean and tidy as it once was.  If you are homeschooling on top of it all, stop putting unnecessary pressure on yourself to keep your home perfectly organized and spotless.  Prioritize things like the kitchen and bathrooms and do the best you can with the energy you have.  If you can afford it or you have a very generous loved one who can help out (ahem), hire someone to clean your home periodically to deep clean.
  34. Your kids don’t need a Pinterest mom.  This ties into #32.  Don’t put pressure on yourself to throw Pinterest-worthy birthday parties and make your kids look like walking fashion models.  They don’t need their bedrooms to look like the Pottery Barn catalogue.  These things are all nice and I’m not saying you are bad if you do these things, but they are not important in the grand scheme of things.  Your kids need love, guidance, shelter, food, and clothing…the basics!
  35. Don’t put pressure on yourself to make your children’s childhood “magical”. I shared this article on my Facebook page recently because it really resonated with me.  Life is already magical for little ones.  We don’t need to feel pressure to entertain them every waking moment.  Once they reach a certain age, they are perfectly capable of entertaining themselves for hours on end with their own creativity if you let them.
  36. It is ok to seek counseling! In the church, it seems that it is sometimes frowned upon to go to counseling, but in my experience, counseling is very beneficial.  I have been seeing a biblical counselor at my church and have learned so much from her.  Check out the International Association of Biblical Counselors to find a counselor in your area.20+ Lessons I've Learned from  Living with Chronic Illness
  37. You will meet many lovely people along your journey who you would not have connected with otherwise.  I have been so blessed by the friends I’ve met at the doctor’s office, at church, online, and through This House of Joy! When you share a common bond and can sympathize on the deepest level with another person, you can often become instant friends!
  38. Choose joy.  Each day, we have a choice to make about how we think and our outlook on life.  I have named my blog This House of Joy because I want to develop a habit of choosing joy despite my circumstances.  Am I successful all the time? Definitely not.  It is something that is going to take discipline and practice!

I hope to continue adding to this list as I learn and grow.

What lessons have you learned while living with chronic illness?

This House of JOY

Photo Credits: Pixabay and Unsplash.

This post was shared with Wellness Wednesday and Allergy-Free Wednesday.

About Sherry McAnelly

Wife & Mommy. Real food advocate. Essential oil enthusiast. Chocoholic. Lyme warrior. All things work together for good.

Comments

  1. Great list! I resonated with every single point, having dealt with CFS for several years! I am doing so much better now, but when I have a bad day now and then, so many of these things come back to my mind. I’m also thankful for the bad days because they remind me of where I was and far God has brought me in this journey back to health.

  2. Mary Whipple :

    This is wonderful, Sherry. You are proving that all things work together for good. Sharing your life, your struggles, the wisdom you’ve learned—will help so many others. I thank God for you. You are such a blessing (always have been). Keep fighting (1 Tim. 6:12)!

  3. Hi Sherry, thank you so much for sitting down and taking the time to send out this encouragement!!! Ahhhh, it is such a struggle trying to find out what is wrong and it can definitely take over & rule your thoughts. I like what you said about what works for one person may not work for the next. I am on day 29 of the Whole 30 and I haven’t noticed one difference as to how I was feeling before. But at least I now know what isn’t causing my symptoms :) I guess it is all about perspective. I also liked your tip on writing things down, I need to document all the stuff I’ve done because my memory only lasts two seconds (Like Dori in Finding Nemo)!!
    Thank you again for sharing I love your website and look forward to your emails.
    Blessings to you, Wendy

    • You are so welcome! It literally just poured out, so I knew I had to share it. :) I had no idea you were struggling with health issues, too! Message me sometime, if you want and perhaps we can compare notes…it’s always great to get input from others!

  4. What a great list. A friend posted this on Facebook and now I have found your website. I really liked the spoon theory. It is so hard to explain to people. And as you know, people always say “But you look fine.” I’ve definitely learned many of the same things through my journey as well. You’ve inspired me to make my own list. I have found that it is easy to go back to life as “normal” when you are feeling better. After a little over a year of treatment my bartonella was gone. And the autoimmune disorder that it had triggered had gone into remission. So after a year and a half to two years I had forgotten much of what I had learned and was back to living pretty much how I had lived before. Then the symptoms started up again. I was diagnosed with another infection, this time a protozoan infection. As I was finishing up a year of treatment for that I found out that my bartonella was back. I will hopefully be finishing up this round of treatment by November. I don’t ever want to be back in this place again. I’m definitely going to check out your information and see what types of things you have done from a natural aspect. Thanks for sharing!

    • Aimee, thank you for sharing your journey so far! I am so sorry to hear you’ve been through so much! It’s nice to have others to bounce ideas around with and share what’s working! What treatment are you doing for the bartonella? xoxo, Sherry

      • Sherry, sorry, I just saw your reply. Currently I am taking two antibiotics (one of which I took the first time around and the other is different), probiotics, plaquenil and 81mg aspirin (in case my blood clotting issues return), thyroid medicine, and some other vitamins/supplements. It comes out to about 50 pills a day. I am also using voltaren on my left hand. I have quite a bit of inflammation and pain. Luckily it seems to have helped.

  5. Thank you for sharing! You might be interested in my story. It has some similarities with yours. Part of it is here: http://www.familyhomehealth.blogspot.com/2014/06/food-as-medicine-for-incurable.html. Some more of my story is here: http://www.familyhomehealth.blogspot.com/2014/07/how-to-detox-and-why-you-should.html.

  6. So encouraged to see what God has done and will continue to do in your life. You ARE a blessing! Thanks for sharing…

  7. Learning so many things as I’m on my edge. Thank you so much Sherry….

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  1. […] you and frustration can set it.  But there are always lessons to be learned.  Sometimes it is the lessons we learn in times of illness or other struggles that we remember the […]

  2. […] you and frustration can set it.  But there are always lessons to be learned.  Sometimes it is the lessons we learn in times of illness or other struggles that we remember the […]

  3. […] there’s one thing I’ve learned over the past couple of years with Lyme disease, it’s that we need to be advocates for our own health.  We, as patients must take an active […]

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