The Power of “No” When You Have a Chronic Illness

Chronic Illness and Lyme Disease

A life that includes managing a chronic illness can be a real challenge! If you’re in a similar boat as mine, I want you to know that you are not alone. The list of things you may be responsible for would be overwhelming for anyone, but when you add in debilitating symptoms life can get even more cumbersome.

While I wish that I had all the energy in the world to accomplish everything I desire, it’s not realistic right now. As I prioritize health, there are other things that grown adults should be able to manage that I just don’t quite have together. I’m learning that it’s okay. It’s even good. I know my boundaries right now.

If you’ve felt like you’re drowning while facing a chronic illness and don’t know how other people seem to live “normal lives” while facing similar challenges to yours, you’re going to see that I don’t have it all together. In fact, my life is often of the opposite of “all together”…

If you’re anything like me, then you are in good company!

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Here are 19 things I don’t do as I face Chronic Lyme Disease:

1) I don’t cook

The crockpot is my best friend. I’ll throw in meat and veggies for some lunches and most dinners. Then, I drink a green juice/smoothie or a bone broth protein shake (often blended with with almond milk, moringa, blueberries, spinach, and ice) once or twice a day.

2) I don’t make plans

It’s that simple. My current schedule doesn’t allow for me to make plans because there’s a 90-95% chance that I’ll end up canceling them. Instead, everything is done on an “if I feel up to it” basis. It’s working for now.

3) I don’t wear makeup

Most of the time I don’t even leave the house, so nobody sees me. Long gone are the days where I get anxiety over going out without makeup. Now, when I make it out it is a victory no matter what’s on my face! I usually just wash with a gentle cleanser and put this amazing oil on it to moisturize.

4) I don’t clean

Once the toilet has a visible ring, I clean it. When the floors are overly dusty, I’ll do a quick sweep. I love the efficiency of using the Swiffer! Other than that, cleaning isn’t a priority right now (and this is something I never thought I’d say!).

5) I don’t go a day without crying ;)

This isn’t necessarily intentional. I am not very good at controlling my emotions.

6) I don’t wash my clothes after each wear

(Another trick: I have two closets – one for newly washed clean clothes, and the other for clothing items I’ve worn once or twice already and I plan to wear again before washing – the same system can be used if you just separate clothes in one closet with worn and unworn on each side.)

Lyme Disease and Chronic Illness

7) I don’t respond to texts right away

This one used to make me feel horrible, but now I realize that if it isn’t urgent it’s okay. I give myself grace with this because, honestly, I feel better when I can live without being on my phone.

8) I don’t pay attention to much news except local (which is necessary for my job)

The news can be depressing. Enough said.

9) I don’t feel guilty about not being “productive”

I used to get worked up over this, but now I don’t care very much. Right now, my most important job is healing.

10) I don’t try to attend everything I’m invited to – in fact, most things I just don’t even consider attending

Right now, I know what my body can handle and it means saying “no” to most invitations.

11) I don’t hide my emotions

I sometimes wish I were better at this, but I have no poker face…so the truth of how I’m feeling just comes out.

12) I don’t sacrifice sleep

If my body needs to sleep, I let myself have it. I don’t stay out late, and if insomnia keeps me up, I let myself sleep in because I know how detrimental a lack of sleep can be to my body.

13) I don’t get my own groceries every week

My boyfriend and family have helped by picking things up or taking me to the store. I can’t always do it myself, and I’ve learned to be better about asking for help when it’s necessary.

14) I don’t keep up with friends very well

This is a season for healing and it means that a lot must be sacrificed for the sake of health. I don’t always see social media posts or call to check in with friends right now. When I am healthy, I will start connecting wtih friends again, but at this point I just can’t.

15) I don’t keep up with celebrities, the newest movies or tv shows, or anything pop culture

It’s not worth it. Never has been that important to me.

16) I don’t push myself

If I’m not feeling up to it, I don’t try to convince myself to go do something my mind and body are not prepared for. Even with church, if I’m not feeling very well, I don’t make myself go. I used to be of the mindset that you have to push yourself, but when your body is telling you to stop and rest it’s important to listen.

17) I don’t get lax with my diet/medication protocol when I’m feeling decent

I keep doing things by the book no matter what. Until I see major improvement and know that laying off the strict protocol can be done without harm then I will continue to stick with it.

18) I don’t stop dreaming

I still have hopes, dreams, and goals for my life. Being ill doesn’t mean that I’m going to give up on the things I had worked for, but it might mean things need to be tweaked. I believe that God is working through everything and has a plan and a purpose (Romans 8:28).

19) While I let myself experience grief, I don’t live in it

It’s one thing to recognize hardship and the feelings surrounding it, but it’s another to let oneself live in a pit of grief. I don’t let myself live in grief because I know that there’s hope. We can all find that hope.

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If you’re looking for support on your journey with chronic illness, please know you don’t have to walk through this tough season alone! Grab your free copy of my eBook, Finding Hope Through the Fogand join our email community of hope!

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Chronic Illness and Saying No

17 thoughts on “The Power of “No” When You Have a Chronic Illness

  1. I’m in complete agreement with every single item here!! I went through a grieving period that lasted about a year. As I realized I now had a new normal, I mourned the loss of the person I was. It’s devastating and the depression is almost consuming. Thank God for my husband. He’s been my anchor.
    I wanted to comment on #13, grocery shopping. I always enjoyed that and really hated giving it up. Well now Walmart offers free grocery pickup, which allows me to “shop” and allows my hubby to not have to deal with the crazies in the store lol
    It’s a win-win!
    Also being able to talk-text really helps. I have extreme numbness in my extremities so typing is difficult. And if I’m in bed with a migraine I don’t even have to pick up my phone to send a text. Just ask Siri!!
    Little victories like that just tickle me.

    1. Aww, Deborah! I love how you’ve seen some small victories in these areas! That’s encouraging to hear!! Oooh, your Walmart now has free grocery pickup! Mine still doesn’t but hopefully it will be coming soon. :) Also, gotta love Siri!!

  2. I was diagnosed with Lyme after at.least.8 years of having symptoms.I was treated by one Lyme “specialist”,released as cured but it continued to progress.Finally after.a year later I found a Doctor who had had Lyme disease.I was treated with IV antibiotics, (Rocephen) and finally cured.I can relate to everything you experience,even though Loved ones can’t see it.I lost the way of life I once had as an avid hunter,fisherman etc.I have now lost what I cherished most because of Chronic Lyme.My Wife of nearly 30 is Divorcing me because I couldn’t live up to what she thought I am able to do.Nobody knows what we go through daily,this not counting the “bad days”we can’t predict.

  3. Feeling like you’re the only one in your family who let’s everyone down. The chronic pain and low energy level prohibit many activities and the roles I’ve always played within our home are still expected. But I’m unable to fulfill them, and this causes dissent. Life with a chronic illness is a drudgery that doesn’t let up. I pray for hope, healing, better days, but God is saying not yet. I’m just tired…

  4. Hi Emily

    This is exactly what I’ve been needing to hear (or read that is) I want to print the 19 rhings not to do and stick it up to remind me.

    I have a daughter with an under developed brain, who has just finished ‘school’ and my husband is high functioning autistic with severe anxiety, ADHD and hypercondria (Dr diagnosed..he can’t help it) but with that I also have Fibromyalgia, Degenerative Disc Disease, CFS, ADHD, OCD, Sensory Processing disorder and anxiety as well. I feel like a walking abbreviation at times and yet I was taught old school..relationships mean the most to me and so I try to always answer a message as soon as I can..to my own detriment mostly. I’ve been pushing and pushing myself and keep hitting that brick wall but have yet to learn that I need to come to terms with the ‘new me’ Its only taken 20 years so far 😝

    I don’t listen to my body enough or care about myself enough to rest as much as I need to. Asking for help is a huge thing for me, I am learning but a little too slowly. I dont have any support close by either so its difficult, as are finances but I just can not work as well. I’m on the max as far as my painkillers go and that’s just to get me doing everyday normal things. There is so very much I want to be doing and have so many ideas and with a brain that doeant switch off that is really difficult. So… after that essay… I’m just wanting to thank you so much for your article. It really is so helpful and I have to make a concerted effort to put it somewhere I can see it..so as to remind myself that it’s ok and that it’s needed.

    May our loving Father bless you and your words to reach many of us who battle.. and thank you!

    Nikki

  5. Thank you for the words I have searched for to show my family. I have MS and the person I was years ago is gone. You grieve for the loss but the time comes when you must accept what is. My children are all grown with families of their own so I do not have children at home. I think I am harder on myself then what my husband would ever accept. I too want a future so I am printing this post for the days I feel guilty for not accomplishing the tasks I used to run through so easily. May God bless you all and His angels hold those of us with Chronic illness and carry us when necessary.

  6. This is sweet, gentle, tender, and so empowering. I am constantly down on myself for canceling plans or having no energy, doing as little as possible to get by even though every fiber of my spirit wants to do so much more, etc. I used a couple tissues on this one. I will learn from this. Thank you for sharing :) Praying for a few extra spoons <3

    1. Hi Lyn! Thank you so much for your sweet, honest words and prayers. It sure can be challenging to manage life when we lack the energy necessary to do basic daily tasks. <3 Praying that God would meet you right where you are right now!

  7. Its so nice to hear someone who has so many of the same situations
    You are an inspiration
    I have rather given up hope
    I am older and most of my life is over
    I look forward to your posts
    Thank you for being “real”
    May our Lord Jesus bless you and your family

    1. Thank you so much for reading and for your sweet words, Kim! I’m sorry that you have also been in similar situations, but I’m grateful for the way that God orchestrates connections between those who are also walking difficult paths. So glad we have connected!

  8. I read this list out loud to my husband and 14 year old daughter. I think my husband was surprised and my daughter said, “How uplifting.” I read it purposefully to them. As I’ve said, in various seasons of our lives, “This is my new normal.” Thank you for writing it in such bottom-line way. I look forward to reading more from you.

    1. Hi Deana! Yes, that “new normal” is definitely different than the way most people live, but giving yourself permission to step back from expectations and do what you can do in the moment is freeing! I’m glad you were able to share this with your husband and daughter. :) Thank you so much for reading!!

    2. Deana, I want to print this. You’re right this is our new normal. I’ve been pushing and pushing myself and I literally can’t anymore. I love the basic bottom line way that Emily wrote this as well and it’s so true. Strength to you and each of us.. not just strength to do.. but strength NOT to do.. Nikki

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