1. The illness I live with is: endometriosis, fibromyalgia, and celiac disease
2. I was diagnosed with it in the year: Endo – 2003; Fibro – 2006; Celiac – 2010
3. But I had symptoms since: 2002
4. The biggest adjustment I’ve had to make is: Accepting that its ok to say “no”
5. Most people assume: I’m healthy because I work
6. The hardest part about mornings are: Getting over the morning stiffness thanks to fibro
7. My favorite medical TV show is: House – maybe he can figure out what is wrong!
8. A gadget I couldn’t live without is: my TENS unit
9. The hardest part about nights are: Getting comfortable enough to fall asleep because of the pain
10. Each day I take __ pills & vitamins. (No comments, please): 15
11. Regarding alternative treatments I: am open to trying anything – after clearing it with my doctors
12. If I had to choose between an invisible illness or visible I would choose: at the moment I’m writing this – visible – as at least I feel like my pain would be validated
13. Regarding working and career: I want to start a non-profit to provide counseling and resources for individuals (and their families) with chronic illness but for now, I am just working to pay the bills.
14. People would be surprised to know: I spent our first 3 wedding anniversaries either prepping or recovering from surgery.
15. The hardest thing to accept about my new reality has been: that I have no guarantees that I will ever be “healthy” again
16. Something I never thought I could do with my illness that I did was: have the ability to support and encourage others who are experiencing the same thing across the country and the globe
17. The commercials about my illness: make me want to throw something
18. Something I really miss doing since I was diagnosed is: Being spontaneous
19. It was really hard to have to give up: not getting to experience pregnancy
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: head to an amusement park and ride as many roller coasters as possible
22. My illness has taught me: that I am much stronger than I ever could have imagined
23. Want to know a secret? One thing people say that gets under my skin is: offering a magical “cure” whenever you say you feel bad or am in pain
24. But I love it when people: say “I’m sorry you are hurting. I will pray for you.”
25. My favorite motto, scripture, quote that gets me through tough times is: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” ~ Jeremiah 29:11
26. When someone is diagnosed I’d like to tell them: allow yourself to grieve. Its a part of the process and if you allow yourself to go through the steps, it really will make such a huge difference.
27. Something that has surprised me about living with an illness is: that you can spend all day in bed and still be exhausted.
28. The nicest thing someone did for me when I wasn’t feeling well was: brought over some chick flicks that I could watch in bed and relax
29. I’m involved with Invisible Illness Week because: it is so very important to raise awareness for these illness and support and encourage all of those individuals who battle these illnesses each and every day
30. The fact that you read this list makes me feel: supported & encouraged. Thank you for your support!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: endometriosis, fibromyalgia, and celiac disease
52 comments on “30 Things About My Invisible Illness You May Not Know”
Great post, you gave most of the same answers I would. The only one I’d change is that If i had a day without being sick I’d eat steak all day long.
I’m so glad you’re able to help others through your disease, it really is a great ministry.
I like the way you tell your readers how it is to have invisible illness. I hope you get to start the nonprofit counseling and resources agency. May be this blog can be a start to that.
Thanks for the encouragement! That is my hope that this blog can be the foundation for a future ministry!
Yeah, I agree with you on those commercials. Congrats on fighting this painful disease. SITS sent me by, and I’m glad they did!
I could have written your list! I was diagnosed in 96 at 30 years old. At the time, all 3 of my kids were little. Originally, I tested positive for Lupus. After repeatedly going back and forth with doctors I was told I had fibromyalgia (the disease that isn’t real…we just call it this so you’ll shut up disease!!). I was so frustrated! And miserable!
Most of the time…..I was able to stay home. Until the last 8 years (my kids were all in school then). But I stayed home while they were little. That really helped me to stay pretty healthy and stress free.
Now I work full-time and in a high stress job. My fibro has been at an all time high!
It’s awful! And it’s hard to tell people…..I’m not feeling well when I look perfectly normal. So frustrating!
The first thing I do when I get home…..is go to bed. Otherwise, I cannot prepare dinner. I totally relate to you!
God bless you sweet friend. I know it’s hard!
I’m almost 44 now
I love how you listed everything out, your journey mixed with some tips.
Here are some ideas you may not have heard of yet? Hypnosis and EFT.
E-mail me if you want more info on either.
I am so sorry to hear about the pain you are experiencing daily! I sincerely hope they find a cure or better treatment for you sometime soon.
I have an invisible disease (not quite as bad as yours), but I was diagnosed with gastroparesis – stomach paralysis. My stomach doesn’t digest solid food. My doc has me on a soft/liquid diet, no fruits, no veggies, no beef, no fats, no fiber. I eat a lot of yogurt & oatmeal. I can easily get by eating one meal a day. I never get hungry & if I eat when I’m not hungry, I have severe stomach pain (kind of like a migraine in my stomach). And people don’t get it. They seem to get offended if I say “sorry I can’t eat that hamburger, hotdog, etc”. One good thing is I’ve lost 35 pounds and I can still eat chocolate (it’s soft).
I’ll add you to my prayer list, praying that your pain level stays low.
Stopping by SITS BLog Frog.
I have never heard of gastroparesis before! That sounds awful! I would never rate one invisible illness over another as they each have their challenges! Thank you for sharing your story with me and thank you for the prayers! I sincerely appreciate it!
This post had me reading from beginning to end. One thing I think is important is your decision to blog about your situation…because of this, there are others who are able to connect with you because of your platform. This is empowering and it is powerful. I cannot imagine how many silent voices there are who have to endure illness – especially invisable illnesses. Thank you for sharing.
Thank you for your words of encouragement! They inspire me to keep pressing on!
This is a really enlightening post. I also love that you offer others links for help if they have any similar issues. Thanks for helping those of us on the outside understand what you go through.
Thank you for visiting & for your kind words! Now I must check out these fat-burning chocolate chip cookies you have posted about!
Thanks for sharing so much of yourself! This is my first time here (came by way of BF, SITS) and its nice to understand a bit about you. :> I think you are very brave. Chronic pain can take someone down, good for you for empowering yourself!
Hi Jamee! Thanks for stopping by my list of 30. It was quite eye opening for me just to do it. I’ve been in denial for so long, just answering these questions helped snap me back into the here and now.
Jeremiah 29:11 My life verse since I was saved in 1991
One of the things that stuck out to me was that even after spending all day in bed, you are still exhausted. I’m so glad I’m not the only one. I did share that sentence with my husband, to explain a little more.
I get so hung up on the guilt! The guilt of saying no, not doing all I want/can/used too
I’m terribly guilt struct over the burden I must be to my husband and kids. My husband is such a good man and has never done or said a thing to make me feel this way, it’s just me! That’s why I go to counseling!!!
Thank you for sharing, for reaching out to others, for being an encourager and a friend.
I’ve read through a few people’s ’30 things’ and I find it interesting to see how similar they are, no matter what the illness is; physical or mental. It just shows how much of an impact an invisible illness can have.
I wish you well with your journey
Thanks for sharing, I was once diagnosed with Fibro, which my final diagnosis is (drum roll please) Lupus. I have had Rheumatoid Arthritis since I was 3 years old. It went into remission, but it and Lupus decided they would show the lab results that I had Lupus and was out of remission with ‘ol Arthur’. They picked the most convenient time also, I was recovering from having part of my shin removed due to Cancer. Hey, life is a party.
I have read two posts and neither one mentioned anything about anger. Don’t you get angry, disgusted, upset, etc., that our lives have now been ‘handicapped’? I’ve lived with the arthritis my whole life. But I get angry when I see ‘able bodied’ people take advantage of their supposedly ‘healthy’ bodies, when I have nurtured mine my entire life and still get the ‘lovely challenging co-habitants’. I have been afraid to blog, I am scared to open myself up about this. I know it is a growing pain and it drives me crazy when people choose not to be educated about us ‘invisible ones’. HMMM, I guess I have some thinking to do.
Thanks for sharing and hopefully, my finger joints will ‘loosen’ and I can ‘push the fatigue a little’ to share my story. It may just lighten my load huh?
Girl, I definitely have my moments of anger, disgust, and frustration! Its a part of grieving what we have lost! Some days its better than others. I have done A LOT of wrestling to get to where I am now, especially with my faith. I had all kinds of questions and doubts and really wrestled with where God was in all of this. I think that it was through this process that I was really able to come to terms with certain things about living with chronic illness. It doesn’t mean that I think its fair or that I don’t get angry about it but it has made it a little easier. Blogging has helped as well as seeing a counselor to get everything out there to where I could deal with it!
Hiya sweetie, you have given me inspiration and more courage knowing that you have already been there and done it =)
I too suffer with endometriosis, I was diagnosed with it at the age of 23 back in 1995, but had been suffering for many years before being diagnosed and had been told by so many elderly male doctors that there was nothing wrong with me.
I was also diagnosed in 1992 at the age of 20 with IBS, however last December I went to my doctors surgery as over the past 2 or 3 years I have been suffering ever increasing joint pain and loosing weight without trying.
And thankfully I had a new GP, the old one had at last been forced to retire by the GMC (General Medical Council- here in the uk that’s the name for the main authority over healthcare proffs),anyway as the old doctor would always brush me off with tablets of some form and tell me well loosing a bit of weight would do me good, it was a nice refreshing change as well as strange to be listened to by a doctor, and my new GP ordered that I have a series of blood tests, they came back with extreme deficiencies and he was not happy with the fact I was loosing weight and couldn’t explain the joint pains. I asked if they could be the onset of arthritis as that is a condition that is rife in my family, but he wasn’t convinced as the symptoms were not consistant with arthritis.
Anyway he referred me to the hospital to another gastroenterologist and also requested an urgent appointment for me.
3 months went and I eventually got an appointment but my GP was such a caring doctor that during the wait time he continued to monitor everything by doing blood tests every fortnight, now that’s how all doctors should be.
The gastroenterologist did a basic external examination and found that my abdomen was quite swollen and extremely tender to touch and the pain in my joints very painful, the x rays they took came back clear so they ruled out arthritis altogether.
So she asked that I have a colonoscopy and endoscopy done and biopsies be taken, they were testing for celiacs disease and chrons disease, as they thought that I had been misdiagnosed with IBS all those years ago.
4 months have gone by now and I have just had my follow up appointment with the gastroenterologist and they say I don’t have celiacs, but still can’t be 100% certain that it isn’t chrons disease, and so I have got to go back to the hospital for an MRI, so I am now waiting for an appointment for that, however I have since been back to my GP and he did some further blood tests as he wasn’t completely happy with their findings or not in this case, and they have come back almost the same as back in December.
I have low Vitamin D levels, very little calcium and am extremely low in electrolytes he has put me on a higher mg of vitamin D, folic acid and calcium tablets.
I am just wondering as celiacs is something new to me, and I didn’t even know what that disease was until I looked it up, but is it possible that they have either missed something, or mis diagnosed me again?
My GP isn’t entirely happy and has asked me to keep going back to my surgery for fortnightly blood tests, and to keep him informed as to what the say and do, he has said that the MRI may show up something but the chances are it won’t give them a true picture but it might help with my endo as that too is under question as it has been 9 years since my last lap to remove the build up and cysts that formed.
Do you think if they say that there’s nothing wrong after the MRI that I should ask my GP who is still very concerned to re refer me for further testing and see if a second opinion and fresh eyes could find out what the problem really is?
Thank you in advance I am asking your opinion as you have been through this yourself and so you are basically an expert on these things compared to me =)
And thankyou for your inspiration, you really have had a testing time and I hope that one day you will be blessed with a little one, and will one day have a pain free day or week even if it’s not completely pain free but more of a coping but comfortable coping pain =)
Biggest hugs T. xxxxx
Hey there chica you can get through this i have also been having problems with fibro i was diagnosed when i was 14 and have been suffering with it for 5 yrs or so and my doctor thinks i may have an auto-imune disorder and i understand where your coming from with the comercials the ones on fibro and depression grate on my last nerve. Many people believe that if you say you have fibro or one of the other problems out there your just making it up to get out of doing stuff but if i could go a day without pain or constantly feeling tired and sick I would do everything i could do in a day and i may also have celiac have to run that one by my doc on my next visit. i take so many pills that its hard to keep track of when to take each one. and i just want to say it makes me feel better when i see that im not alone.
I hope you are able to have a day or two without pain or atleast minimal pain and that you have as good of a day as possible.
thanks ~ C~
Thanks for sharing. I did not know about this website and I did not know about this week. Thank you.
[…] If you are new to A New Kind of Normal. welcome! I am so glad to have you! To tell you a little bit about myself – my name is Jamee and I am getting ready to turn 29 years old (in 7 days)! I am a proud youth pastor’s wife and mom to a beautiful toddler named Abby! In addition to being a wife and mother, I am a chronic illness warrior! […]
Thanks for your story. I have never heard of invisible illness. It is so true, I often wonder if people look at me and say to themselves. “lazy lady why do you take the elevator” I need a pin that says “just cuz I look healthy doesn’t mean I am”
I love this post. I, too, have fibro, and it’s a daily challenge. I agree with so many of your wonderful answers. I laughed about the commercials- it’s so true! Why don’t they show a mom with a filthy house, kids watching tv, and a mom asleep on the couch? Show us on our bad days people! That way others w/out the illness would see what it’s really like on our toughest day!
I love your optimism and faith. Keep it up!
I completely agree! My husband feels the same way with glucose meter commercials (he’s diabetic) where their blood sugar is always perfect when they test! He says to be a truly accurate commercial they need to show a couple highs and lows in there! Thank you for visiting my blog and making my SITS day special!
I suffered from Endo, but it was never as bad as most women. I was able to become pregnant without any problem with BOTH my children. I’m thinking some kind of miracle occurred, because the pain I had before I was a mom was unreal. Every month, people just didn’t get it.
My cousin has Fibro and Celiac, however, she’s also got some kind of stomach issue that does not allow her to have a non-gluten diet, because the pain from this stomach issue is worse than the pain she had with Celiac. But they believe that the Fibro and Celiac are connected in some way, have you heard that at all?
Right now I suffer from chronic pain, but it’s my wrist and hip…..no one can tell me what the issues are. So I live in pain, all day, every day with two little ones to chase after. And I suffer from pretty bad migraines that meds don’t seem to work to stop, or cut the pain from.
So basically, I totally understand the pain……
I’m glad I found your blog through SITS.
Boy, we have a whole lot in common! I’ve had Fibromyalgia for more than 15 years now (all of my adult life), and there’s a whole lot of speculation by my doctors that I have Celiac, oh yeah, and Endo too. Boy can I feel your pain – literally.
Take care and God bless.
Michelle at greenearthbazaar.com ~ Fellow SITStah. 😉
I also suffered from endo. I ended up having a hysterectomy a month before my 27 birthday! I’m also Type 1 diabetic, and was diagnosed with breast cancer two months ago. I had my bilateral mastectomy 2 weeks ago. I still don’t think it has completely hit me yet… losing my reproductive organs and my breast in a 14 month time period. It’s so much harder to recover from major surgeries when you are diabetic. People see the affects of my cancer, but the diabetes…they really don’t. The sad truth is, so many of these ‘invisible illnesses’ are slowly killing the people they affect.
I can relate to a few of those.
My son has high functioning autsim and I often feel like it is an invisible thing.
Stopping by from SITS.
Thank you so much for sharing…it was so insightful. Jer. 29:11 is one of my favorite verses…I just love it!
Want to know a secret? One thing people say that gets under my skin is: offering a magical “cure” whenever you say you feel bad or am in pain
AGREE TIMES A MILLION!!! I have very invisible illnesses, depression, severe anxiety and OCD. I rarely tell anyone they’re even a part of my life, because the inevitable starts. “oh, have you seen the ads for X meds? They look like they work.” Of course they do, they want you to buy it.
Then there’s awesome “if you jsut smile you’ll feel better”. I want to punch those people…Not the best reaction, but I honestly want to.
Wow, thank you for sharing this. There is so much for each one of us to learn about the suffering of others. We all suffer in one way or another and it is not always visible to everyone else. Thank you for sharing your perspective and emotions. I am sorry you are hurting. I will pray for you and others who carry this disease.
I’m so sorry for your pain ~ both physical and mental. I, in hindsight, have had fibro and chronic fatigue for 20+ years, which is debilitating at best some of the time. My greatest frustration is watching so many of my desires, dreams and goals pass me by. I’ve also had a terrible time getting any true assistance from Dr.s in our top-rated teaching hospital system.
It’s impossible to know how others feel, so for you I simply want to offer support and the hope that today is a good day for you.
…over from SITS.
What a great set of questions. I love your answers.
I completely understand staying in bed all the time and still being tired. And the irritation of everyone around me trying to cure me.
But the one that truly tugged on my soul, because I experience it over and over, is the understanding that I may never feel any better. This may truly be as good as I get. That one is so hard.
I’m sorry for your pain. The physical. The emotional. The spiritual.
Thank you for reaching outside of yourself and using your experiences to touch the life of others. You are doing a great work.
Oh how I can so relate to you on this comment. Just reading it reassures me that I am not alone in this fight.
This is a great list and I can relate to the answers! Can I use this list on my blog? (With my own answers, of course!) 🙂 Hoping you have a pain-free day!
Absolutely! Help spread the word! Come back and leave me a link so I can visit it!
Here ya go! http://wp.me/pV9RB-eS
I love this comment you make: One thing people say that gets under my skin is: offering a magical “cure” whenever you say you feel bad or am in pain. I couldn’t agree more. Great article.
Thanks for this. My invisible illness is different from yours, but man, that rang a lot of bells. It’s a comfort to know that there are other folks out there in the blogosphere who understand. I’m glad I found this!
[…] are facing the same battles. It is an excellent reminder that we are not in this alone. Here is my invisible illness post from last […]
I continue to be amazed at the over abundance of similarities amongst us all. Your post was wonderful. Thank you for sharing.
I am always amazed at the over abundance of similarities we all share. The feelings, thoughts, just the general everyday admissions and omissions. Thank you for sharing. Tammy
Wow, I felt like I was reading my own writing here for some of the points. Thank you for your honesty! I haven’t had a set diagnosis yet, but i feel your pain. It’s a daily struggle, but God is so faithful, and He is our daily sustenance!
[…] You have supported me through each new diagnosis. […]
Hi Jamee, I’m sorry you have so many invisible illnesses to endure but it’s great to hear your positivity and staying strong. I have endured my invisible illness, rheumatoid arthritis, for the past 10 years after my oldest son was born. As if parenting weren’t challenging enough, I have permanent joint damage to my hands and feet. Maybe it’s not so invisible as my disease has progressed. I have a blog too where I try to look on the bright side and appreciate my small victories…but sometimes RA gets the best of me as I wrote about my painful flare today. Thanks for bringing attention to chronic illnesses and educating people that “things aren’t always what they seem.” I hope that’s one lesson I can teach my kids, to really get to know a person and not rush to judgment based on what a person may seem to be. As you mentioned to another commenter, blogging is my stress reliever too, somehow it makes me feel better writing it down and getting it out there and usually by the end of the post I find my way back to the bright side of the situation.
[…] but it is also great to visit the link up and meet other spoonies and compare stories (here is my 30 Things […]
I love your #13. I wish there was something like that near me!
I just came across this list, I guess it’s a little late to say thank you, but you just gave me a shot of courage. Laying it all out in a list like that really provides some perspective … and maybe, for a moment, some distance. I don’t have the nerve to publish my list yet, but this will be my guide when I do. So enpowering! Bless you!
I can relate to many of these things. Polymyositis is one of those invisible illnesses as well – people think nothing’s wrong when they look at you, but inside you’re just trying to get through the day. Survival 101. Thanks for visiting my blog. I love yours! 🙂
This is just the beginning for me to follow your story, Jamee. You and your family are added to my prayer list. To have read what I have read so far and to see the outpouring of love and support from all who follow you is a miracle in and of itself. Thank you for being so willing to share what to most people is something they keep close to hand and out of the public’s eye. God is with you all the time.
Thank you so much for following me and praying for me and my family! It truly means so, so much!