“Just go gluten-free and you’ll be fine!” That’s what my original GI doctor told me over the phone when she diagnosed me with celiac disease. I found hope in her words, and even celebrated the diagnosis. Finally, I can have my life back! Or so I thought.
Now it’s two years later. My blood tests are all normal, my intestines have healed, I should be in that “fine” place by now.
But I’m not.
Oh sure, some days I feel fine. I even have stretches of a week or two at a time when I feel almost normal. But I can’t seem to get it to stretch farther than that. Fatigue creeps in, body aches flare up, and my head becomes foggy and painful.
I still don’t know if this is the new normal, but through community I’m starting to realize many people with celiac disease and other autoimmune issues feel the same way. So instead of going back to the doctor and ordering more tests, I am trying to embrace a new truth. A new reality.
So here are 5 things I’m learning about life with an autoimmune disease. Feel free to add your own truth to the list.
1. Many days are a race against the clock. I seem to have tons of energy in the morning, then my brain starts to have trouble in the afternoon. I’m learning to do the most important things first and not even attempt to do any work after 4 pm.
2. I’m not alone in this. Living with an autoimmune disease can feel isolating. Having an invisible illness is hard to explain. Thanks to a thriving gluten-free community, I know I am not alone.
3. I need to stay flexible and keep my expectations loose. Although I may plan to do an activity, I need to be ok with calling it off if I’m not feeling well. I also need to be careful not to say “yes” to too many things. I’m learning to be very picky with my time and energy.
4. I’m learning to give myself permission to rest. Resting is so hard for me. I’m a go-getter and multitasker by nature. True rest for my mind, body, and soul sometimes feels like torture. It’s a process.
5. I have strength even when my flesh and heart fail. My faith is strengthened as I am forced to lean in. I cannot do this in my own power.
What would you add to the list? Please share some wisdom!
I’ve struggled to embrace this as my new normal as well. Right there with you…
I need to be more intentional to remember those same 5 things. I forget too often…
These things are hard to remember…easy to forget. I’m trying.
I am so glad you posted this. I was so relieved when I got my celiac diagnosis as well. And I did feel so much better after I healed up, then every time I have an accidental glutening, it feels like I take 10 steps back. I was doing pretty good last year for a while, feeling like a “normal” mom, when I suddenly got Hashimoto’s out of the blue (I’d been being checked for it yearly). Now I’m a little over a year into dealing with that and still not feeling well. Between both autoimmune diseases and chronic migraines (for 20 years), I just feel crappy so much of the time.
I’ve been wondering too if I just need to get used to this being me – a person that doesn’t have all the energy to do all the fun mothering, housecleaning, serving in church, ministering to friends, blogging, etc.
I totally agree with all that you posted. I have a good day here and there, then the next day I’m so wiped out I can barely function.
For me, one of the hardest things is finding that balance of how much I can say yes to and still function, versus saying no to everything and feeling isolated.
My kids don’t mean to, but heap on so much guilt: “Mom, when are you going to teach me to cook?” “Mom, I’d really like to learn to sew.” “Mom, remember you said you’d take us bowling this summer?” “Mom, you said you would play Wii with us but you haven’t”
Dealing with the crappy body is bad enough, dealing with the Mom guilt on top of it has been overwhelming to me the past few weeks.
Thank you for this post. It helps to know I’m not alone in this.
Oh Michelle, I totally hear you on the mom guilt. In fact, it’s such a huge thing that I felt like it deserves its own blog post…as soon as I have the energy to write about it.
Finding balance is something everyone struggles with, but it seems a lot harder when you’re not sure how your health is going to hold up on a day to day basis. Here’s hoping we get a better sense of balance soon.
This hits it on the head. It has taken years for me to come to grips with my limitations. One thing I would add to the list is to not be afraid to discuss these limitations with family, friends and colleagues. Communicating to those who need to know is important. A little extra support goes a long way. Thanks for posting Alysa. I couldn’t have articulated it better.
You are so right, Jess. Communication is key. Family and friends have no way to support you if they don’t know what you’re going through.
You nailed it. But I will say this, I had a blood test done to see which food sensitivities I had. When you have an autoimmune disease, anything at anytime can become a problem. They found 55 foods I had sensitivities to ranging from mild to severe. It is very difficult to avoid all things at all times. However, when I can, I do so much better.
I’ve wondered about getting this test done, but I’ve heard mixed reports on the accuracy. Also, it’s overwhelming to think about cutting out more foods.
so needed to see this. have had a very difficult adjustment of learning to say no and still forget that i can’t do all i used to do. i also have fibromyalgia and hubby is disabled. so sometimes i just plain feel overwhelmed.
talking to family leaves me feeling defeated as they think i should just “push through” because my husband needs me. they just do not understand.
but i am learning to pace myself and to do what i can, when i can. i so understand the reference to making “tentative plans”. and i don’t commit to anything at church as i just never know. i mean, if everyone is counting on me for goodies, they may not get them!
i guess i am mostly ok with not being able to do much. i am thankful to God for the help He gives each day. but most of all, i leave the future in His hands as thankfully i don’t have to face it without Him!
Brenda, it sounds like your faith is strong. Thank you for your encouraging words.
“It SHOULD be fine”/ “you can have a little”/ “is gluten free really necessary?”/ “you’ve been fine eating it your whole life.. It’s not a big deal stop over reacting”/ “you can have a little”/ “gluten free is easy just don’t eat pasta or bread duh.”
I’m learning to let go of comments and questions made by people who don’t realize how hurtful and ignorant their words are to someone who is fighting everyday to stay positive and move forward in the midst of having an autoimmune disease. It’s easy to give in and go to my own pity party but I am choosing to let the words go and focus on my own life. They know not what they do.
Resonating here!!!! After almost dying from celiac, and the drs thinking I was nuts, I was vindicated when we discovered my problem. This was 3 years ago and I had some time of great health but some where its crap. And I am gun-shy of doctors. I just can’t go in and say ” I don’t feel right”. It’s nebulous. And it’s probably all part and parcel of the celiac crap. So I too have a new normal, but sometimes it’s hard to accept.
Ada, I know exactly how you feel. I’m ready to be done with doctors for a while.
Such good advise, for everyone with auto immune problems. I guess from my side of things I would add: start keeping track of the things that recharge your batteries or relieve your pain, even if its just for a short period of time or temporary. Then when you are really suffering go to your list and try a few things to get some relief. I know on my bad days my brain can’t even remember the simplest things.
Carey I love this idea. Thank you!
Yep, loved this. I am verrry picky about which things I can afford to spend energy on. I always evaluate activities based on my current energy stores. And I am criticized for that. Frequently. (“Just push yourself more and you’ll adjust.”) People do think that I make things up with my health, because it is vague and hard to explain…. but I’m managing to make due with the health I’ve got, and be thankful in spite of myself.
I’ve learned that those who truly love and care about me take the time to understand. Everyone else just doesn’t get it. I’m glad you are managing to be thankful through all the challenges.
“Oh sure, some days I feel fine. I even have stretches of a week or two at a time when I feel almost normal. But I can’t seem to get it to stretch farther than that. Fatigue creeps in, body aches flare up, and my head becomes foggy and painful.”
The perfect description of this PITA disease.
PITA – exactly right.
AMEN SISTER! I have psoriatic arthritis, a different autoimmune disease, but everything you said applies to my life as well. My #6 to this list is that I had to stop expecting other people to “get it”. Unless they live it, they don’t get it. I can’t expect them to. I wish they would, but all I can really expect is for them to respect my wishes when I say I can’t.
Very true Penny. That’s why it’s so important to have a support network of those who are walking the same path as you!
Six+ months in and still (almost) no progress to show for it, I’m totally on board with everything you wrote (even as much as I wish I weren’t!). I still have hope that over time I’ll keep healing, and in the meantime I’m learning to say “no” and get sleep. Two things that should be easy and yet…aren’t.
Molly, the first year was the hardest for me. The first six months were horrible. It does get better, just not “normal” as we once knew it. I hope you’re plugging into the celiac community, it helps a lot!
Thank you so much for writing this. Actually, this article almost made me tear up because these are the lessons I am struggling to learn right now. I’ve recently passed the three month mark when I’m supposed to be a 100% healthy celiac, and I’m still way below that 100%. I have to do more testing, so this gives me some more motiviation to stay positive and strong.
Actually, I just wrote a similar post about accepting the difficulties of living with celiac disease and trying to change my mindset for it. I hope that I will soon be able to embrace the five lessons you listed.
http://caseythecollegeceliac.blogspot.com/2013/08/body-and-mind.html
I can get pretty depressed sometimes about all of this. People act like I have to prove that I’m sick. I just tell them to Google Celiac. I don’t have time for that kind of crap. I’m too busy trying not to bleed internally, thank you very much! The moments that I cherish are when I run into a stranger, in the gluten free section, that becomes an instant friend and ally. Sweet Jesus! I am not alone!
I love when that happens! The instant bond is so great.
Thank you so much for posting this. It could have been written by me, that’s how much I relate! 🙂 Best wishes to you!
Thanks for sharing! You have put together a great list which can help so many people who are also struggling to live with a life changing chronic illness or disease.
For me, living with Fibromyalgia, a chronic pain illness, I have learned that ACCEPTANCE and learning HOW to live with a chronic pain illness is the best route to regaining your quality of life. As you listed, setting limits on your time, activities and being kind to yourself (positive self talk) is of ultimate importance. And surprisingly, improving the simple yet extremely difficult to do things, such as exercise and better nutrition can really help you feel a bit better and gain a bit more energy.
Having this condition has taught me important things in life too. I learned that family and friends are most important and its the little things in life that matter. I also have gained a deeper understanding and compassion for others who are going through something we might not understand or see (pain all over, extreme fatigue, everyday). It is important to validate and believe the feelings of others even though we may not understand it 100%.
I hope my insight helps educate others and works as a supplement to your well thought out list.