To The Mom With An Invisible Illness

66

invisible-illness-1

Over 100 million people live with an invisible illness.  That is staggering

So Mama, if you live with one, you’re not alone. 

It may not be obvious to others that you have a condition that greatly affects your health, because you don’t walk with a limp or have a wheelchair.  However, there are a ton of invisible illnesses that are unnoticed by the naked eye.  I’m talking about diseases like:  Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Crohn’s Disease, Thyroid Disease, Rheumatoid Arthritis, Autoimmune Disorders and many, many more. 

So, to the Mom with an Invisible Illness, I want to say…

I may not be able to see your pain, but I see you.

I see you work a job outside of the home, and then come home to a household of people who need you. And I see you taking care of them, despite your desperately low energy and the fact that today, your pain is an 8.

I see you taking supplements, making regular doctor’s appointments and stops by the pharmacy, in an effort to manage your illness.

I see that sometimes you have to save your energy for those closest to you, your family, and that might mean you have to cancel plans with me. While I miss hanging out with you, we can text instead.

I see you feeling guilty for the nap you take after work, or for going to bed really early, when your body just can’t function without any more rest. I wish you wouldn’t feel guilty.

I see that you often run a low-grade fever because your body is fighting inflammation.  Because of this, some days you rest and other days you push on.  I see that you are a fighter.

I see that occasional hospital stays or sick days disrupt your life.  But I always see you bounce back.

I see that sometimes you have to ask for help, which you hate, but it has become a necessity when your disease is flaring up. 

I see the smile on your face, even when your eyes are tired and your body aches, when you volunteer to lead the craft for your child’s class party. It will take a lot of energy, but you really don’t want to miss it. And you’ll be great at it.

I see how a person in the parking lot makes a snarky comment when you pull into a handicapped spot and you just smile and rattle off the name of your disease or illness, because they’ve probably never heard of it anyway.

I see how others don’t believe you are sick, because “you look fine”.  And I admire you for not trying to correct them, although it probably frustrates you and makes you feel alone.  I want you to know you’re not.

From one Mom to another, I want you to know that I see you…and I think you are strong. 

Keep fighting, warrior.

Do you have a chronic condition that is considered an invisible illness?  Drop the name of it in the comments below and what you’d want others to know about it.  We want to hear from you!

 

66 COMMENTS

  1. RA and fibromyalgia. I’d want others to know how unkind it is to assume I’m fine when I’m not. I’d want them to know I have more bad days than good. And I’d really like them to know I don’t WANT to have or use my handicapped placard or that occasional motorized cart at Walmart.

    • Kathy, I’m so sorry you are dealing with that. When you have autoimmune issues, it can jack with your body in so many ways. I’m sure that’s incredibly frustrating. Keep fighting! You are brave.

    • Hypothyroid and Hoshimotos – I wish people knew, I need help and asking all the time is so hard, but continually pushing myself is so exhausting. Sometimes I’m so tired, exhausted and overwhelmed I go to the restroom just to cry. When the doctors say there’s nothing more they can do and that I just have to do what I can, it is so defeating. It’s so hard to “fake it” everyday and pretend everything is okay. –

  2. I have Adult Onset Stills Disease (AOSD). When I go to the ER drs and nurses often confess to having to Google my illness. When I stay in the hospital I have drs come and ask if they can examine me and follow my stay since they’ve never seen my diagnosis before. The statistics I tell people is 1/16 of 1 person in every 100,000 people have my disease. Yeah, I won that lottery.

    What people don’t ever know is how great an actress I am. The truth is I’m often afraid that people are so over my disease and me being sick all the time. I know I am!

  3. I have migrains that can hit without a notice. I am chronically tired all the time and right now I am pregnant with surprise #4 (8 weeks) which has me exhausted. I see the Mom’s doing their best and I understand and pray for you.

    • Kyra, Congrats, mama! 🙂 Praying for a healthy pregnancy. I am sorry to hear about your chronic fatigue; but I love your attitude of recognizing that all mom’s are doing their best. That’s so important – thanks for those words.

  4. Sjogrens . So beautifully said, Michelle. There are so many things that we want to participate in and do, but we have to be selective in what we choose to do because we know the price we will have to pay physically for the next three days after doing it. Sometimes we have to take a minute and go cry just a little before pressing on. It really can be lonely sometimes. Thank you for writing this post!!!

  5. This had me in tears! I fight many invisible diseases. I have CFS, lupus, Addison’s disease, fibromyalgia, inflammatory myopathy, and a seizure disorder. People are so mean when you don’t “look sick”. I wish people in the general public were more educated on invisible disabilities. Thank you so much!

  6. Thank you so much for this blog. I have Fibromyalgia (diagnosed in 2006 after the birth of ny third child). I also broke my hip and lower spine and had major surgery to reconnect them in 2014. Once I began to finally heal from that, I was diagnosed with a brain tumor last May. A macro pituitary prolactinoma, to be exact. I am 35, have 5 beautiful children, 2 with disabilities, and every single day is an unspeakable struggle to work and to be the absolute best mama I can be. I don’t like to complain anymore and I keep to myself mostly. This blog really made me feel supported and appreciated. Thank you SO much!! ? Chelsea Edwards

  7. Lupus! For almost 20 years.
    Work at the airport for an airline and have a 1 and a 2 year old sons… There goes all my energy! Still enjoying my wonderful life!

  8. Brought me to tears really needed to read this today. Thank you for writing this.

    Lupus and I wish people would look at the days that I fight through it as harder days than normal rather than thinking oh your fine look what you did today. If that makes any sense.

  9. Ive got endometriosis,antiphospholipid syndrome, sjogren’s, RA and a brain malformation… i hate that when i say im tired or sore or need a rest people dont take me seriously enough to listen and actually offer a hand…

    Im a mummy of 4 and while my body is fighting itself from the inside, im fighting somedays to live on the outside… ❤❤ much love to you all…

  10. I have depression, anxiety, SLE and the beginning stages of mctd. Thank you so much for posting this! I have struggled so much since becoming a mother (to twins!) and until you’ve been in our shoes it must be hard to understand. I try to be gracious and understanding because people just don’t know… But it is so nice when someone just gets it.

  11. I have mixed connective tissue disease and hypothyroidism as well and fibromyalgia (though I argue with the doc about this one sometimes) and just recently I was diagnosed with a vertebral artery dissection of the left side. Spontaneously as best as we can surmise, a major artery that supplies the blood flow to the back of my brain, dissected. This means one of the layers in the wall of my artery tore from another. This caused an occlusion of the artery, slowing blood flow and causing mini strokes. Because of the location of the tear in the artery, I had an almost constant headache on just my left side at a level 5-10 for five or more weeks. I could not move my neck even in the slightest or it would be painful. But I had people say, “but she doesn’t look sick.” If they truly knew me, they’d have known that being out of work for ten weeks something I’d never have done if it could have been prevented.

  12. Lupus and auto immune, I have fought and won against cervical and breast cancer, but the lupus and auto immune, seems like it’s kicking harder some days. Thank you for writing this, I always feel guilty the days I don’t have the energy to get off the couch.

  13. Where to start?!? Idiopathic hypersomulence that may possibly be diagnosed as narcolepsy soon that causes my chronic fatigue. Occipital neuralgia migraines that I started getting after a TBI and vertebral artery dissection with TIA at 37 years old. But, I am still pushing through full-time college and caring for my family, to include two small boys. I am grateful to be alive, to have an amazing medical team, and a wonderful God!

  14. I have Type 1 Diabetes and cervical radiopathy. I’ve been a type 1 diabetic for 23 years. Sometimes it’s exhausting !! I’m a proud mom of 3. And my 17 year old daughter was just diagnosed with leukodystrophy. A very rare horrible disease. So thank you for this post! We are.not alone!

  15. I have idiopathic Subglottic Stenosis. I have 3 children who are 3 and under and an 11 yr old who all keep me fighting to stay positive. But it’s hard to function well and get it all done when your breathing is not good. I think I hate the stigma of chronic invisible illnesses more than having to deal with living with one. People can be so unkind, but it also always you to truly see the kindness that some have which is inspiring.

  16. I have Crohn’s Disease and while it’s currently not painful I feel so many of those things you said. Thanks for “seeing” us. I wish more people could see.

  17. RA and chronic fatigue syndrome. I definitely feel guilt over my low energy levels and need for naps daily. As a stay at home mom, I feel like I’m not keeping up my end of the deal. Chores fall behind. My husband works very hard and then there’s me.

  18. Thank you for this! It’s so inspiring to see that someone recognizes the invisible pain we go through. I’ve been diagnosed with CPTSD which is a nightmare in itself. What I struggle with the most is trying to explain PCOS(polycystic ovary syndrome) to other people.

    It causes my hormones, metabolism, and insulin to be out of whack. I know I’m overweight, and it’s nearly impossible to lose it since my body is working against me. It also makes me have the oily acne skin of a teenage boy along with excess hair everywhere, including the face.

    The worst by far is the cysts. If they burst it is unlike any pain I’ve ever felt. I’m trying to bring awareness to PCOS because thousands of women have it and are never properly diagnosed. Doctors and nurses I’ve had don’t know what it is and I’ve had to explain it.

  19. I love this….only those of us with “invisible” illnesses understand the daily struggle. I am Adrenal Insufficient, it’s a rare disease that prevents my body from producing cortisol, a vital hormone to life. I have to replace cortisol with daily steroids. It’s a difficult balancing act and the weakness, fatigue and constant nausea and join pain is a daily struggle. Very few people have even heard of it, so getting anyone to understand is just to much most days! Thank you for shedding light on this!

  20. This is something that should be talked about. I have hypothyroidism and hashimotos which is an auto-immune disorder. These two combined take ever ounce of energy you have and there isn’t one real confirmed way to treat it. Everyone is different and meds constantly have to be adjusted to stay in a functionable range. Nothing to do for auto-immune besides being conscience on diet and exercise.
    Add to that 2 kids under 4 and 1 of those 2 does not sleep- it’s been 2 years since I’ve slept for more than 2 hours at a time. I’m constantly exhausted, can’t remember things I did 5 minutes ago, and sometimes just can’t be think.
    On the outside I look the same (although tired) but it’s a daily struggle to even get dressed most days!

  21. I’m 32 and have been dealing with depression, anxiety, chronic fatigue syndrome, arthritis and fibromyalgia for the last 8 years. No one in my family really believes that I am suffering and thinks I’m just lazy. My 14 year old daughter hates me because I never have the energy to leave the house. I’ve tried many different medications and nothing seems to work. I’m hopeful there will be a cure someday or at least has something that can give me energy and some pain relief.

  22. Hyper-Adrenergic POTS- likely auto-immune, cervical dystonia, unspecified tremor, interstitial cystitis, and all sorts of headaches and neuropathies. It’s a huge burden, but it takes a back seat to being a mom as often as possible. I’m pregnant with my second and much of my symptoms are lessened, such a blessing! There is no guide to the (often) lonely world of parenting with a disability, so thank you for spreading the word that our conditions are not bigger than ourselves!

    • Please look into chronic lyme disease. It is real and very much here in Oklahoma. Contact Dr. Tricia Butner at Oklahoma heart hospital in Seminole. Just ask for a new patient registration packet for lyme. If you don’t feel the symptoms add up don’t bother booking an appointment but I bet you will. It is free as they mail it to you.

  23. I have spent the last 3 years since having my second child being in denial that I wasn’t ok. I’m not!
    I finally went to the doctor and have now been diagnosed with CFS, Fibromyalgia, Crohn’s, POTS, antiphospholipid syndrome, endometriosis, and possible Lupus…. I think that’s it…. so much has come at me so fast I have struggled to keep it all straight (brain fog doesn’t help!).
    Thank you for this. It really helps to not feel so alone❤

  24. Rhumatoid arthritis in all my joints and fibermiagia. Parked in a disabled spot having a bad day and got hounded from car to fruit and veg section being told how dare u park there, there’s nothing wrong. She soon shut up when I told her NOT all illnesses r visible she went to say sorry but to little to late xx

  25. Lupus, RA, OA, Sjorgrens, Hypothyroid, DDD (Degenerative Disk Disease) and 3 back & neck surgeries to fuse all lower back and half of the neck/cervical, and more. The lupus is getting better and the RA & DDD is getting worse. I hate having to live with pain pills but without, my quality of life would be zilch. The pharmacy employees treat you like your a drug addict. Little do they now, I’d give them up in a heartbeat if I could. (I’m 57 years old and have had Lupus for 32 yrs).

  26. I have Chronic Hemiplegic Migraines… along with the migraine you get the symptoms of a stroke. 1 in 10,000 people have this so not many people understand it. I have two beautiful boys: 3 year old and 8 months. I feel so awful some days but always feel blessed around my miracle babies.

    • Megan, thank you for the awareness of Chronic Hemiplegic Migraines. How scary! Blessings to you and your family. xo xo

  27. Sjögren’s, MTHFR, Depression/Anxiety and undergoing testing for other autoimmune. I have chronic inflammation, chronic migraines, vertigo, and a long list of other health problems. It’s really hard to deal with, but I’m thankful for good doctors who do everything they can to help me and a family who is very supportive.

LEAVE A REPLY

Please enter your comment!
Please enter your name here