Invisible Illness – What You Need to Know
The The National Health Council estimates that around 133 million adults live with a chronic illness. Many refer to chronic illnesses as an “invisible illness” because they cannot be detected by the untrained eye… even then, they’re difficult to spot, diagnose, and treat.
Isolation
Many patients live silently with their disease. Diseases often come with stigmas as is the case with Inflammatory Bowel Diseases such as Ulcerative Colitis. The symptoms alone are not spoken of due to embarrassment. For many, symptoms begin in the bathroom. As they say, “poo is taboo” and no one talks about their bowel habits in polite society. Just talking with your doctor about it can be mortifying.
Another problem with the stigmas is that patients often fight their battles alone. We feel isolated by friends or family members who don’t “get it.” And, if they’re honest, they don’t understand and probably never will. Many of us are accused of faking it. Others constantly tell us it’s all in our heads. There are times that even patients believe this lie. I know I do. Another reason for isolation is that patients aren’t open about their problems and often push others away for fear of rejection. Which in turn compounds the issue.
Masters of Disguise
While chronic illness is not always seen, it most assuredly always felt by the patients and their caretakers. Seriously… oftentimes, we battle 24/7 against our invisible enemies (a.k.a. our own bodies). Like ninjas, we are masters of disguise. We learn how to wear our makeup in such a way to cover our tired faces. We learn tricks for fixing our hair (which may not have been washed for several days due to lack of energy). We wear clothes and accessories to cover things like scars, ostomies, PICC lines and chest ports. And we can fake a smile better than an award-winning actress.
Prepared for Everything
You may even run into patients who appear to be prepared for anything. Got a paper cut? They’ll hand you a bandage, disinfectant and an antibiotic ointment. Headache? We’ll have a variety of pain pills to hand you as well. Nausea? No problem there either! We have meds for that, too. Wet wipes? Yep! I know that not all “prepared” people have a chronic illness… but a well-seasoned patient most definitely will.
Life with an Invisible Chronic Illness
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Like any good ninja, a chronic illness patient can masterfully blend into society over time. Some, but not all, are able to hold jobs. We seem calm and collected when you see us at work day-to-day, but you won’t see the night before. Many patients will spend their nights lying awake in pain, begging for sleep to come. Some of them can’t sleep due to the medications they take. Others will spend half the night vomiting their guts out.
On top of the physical aspect of everything, mental health is also affected. Many of us deal with crippling anxiety and worry about what life has in store for us the next day. Some of us are placed on anti-anxiety or anti-depressants. We put on a good face in public, but behind the scenes you may find them worried, anxious and overwhelmed. Medical PTSD is another issue we face and the mere “beep” of a nearby electronic can send us back to days of endless hospitalization.
Medications are another issue. Patients sometimes have trouble managing their medications–especially when taking multiple different medications. There’s also the cost of the medications. Some treatments will cost $5,000 or more per dose. Even with insurance, medications are difficult to afford.
Conclusion
Invisible illness is all around us. More than likely, you know someone who is battling a battle every day. Help raise awareness for invisible illnesses by starting conversations. The more you talk about it, the more awareness can take place. The more awareness that takes place, the better our chances of finding a cure and coming to a better understanding of the needs of patients who feel alone in their battles. To learn more, visit Invisible Disabilities Association’s website.
After reading all these experiences,I just think that my disease is actually nothing.I am patient of ulcerative colitis from almost 3 years.though my family and friends are always there to support me but I still feel isolated.as no one understands me.i am just in my youth and all my hope has died and I have accepted that I have to live my whole life like this ,visiting hospitals,constant pain of injections,feeling bitterness of steroids and fake smiles on my face.
Tanzi, I am so sorry you feel alone. You are not. Please don’t ever hesitate to contact me. I am here if you have questions or need to vent. Email: colitisninja@gmail.com
RSD different Joints swell maybe you broke a bone or damage a part of your body. Starts in a limb. Kind of new they don’t know a lot about it haveing a hard time finding specialist near Syracuse NY. insurance companies don’t understand it.
I have Lymphedema, I work full time, but by end of the day I stuffed. I’m always looking for a cure. I’m in a autoimmune diet and magnesium oil spray for my body. I eat a lot if good fats and the joint pains have almost gone. Since I am using food for medicine I am getting better by the day.
Wow just read all of this and I am praying for a cure one day that you will be accepted by every one and have friends here on facebook to pray for you like I am going to do I also have a disease called Epilepsy and it’s hard for me to keep my emotions from getting the best of me each day but thanks be to Jesus he made something called a service dog that would learn how to help us humans with some of these diseases knew we would need a furry friend when other people fail to realize that we the people with these awful painful diseases need them folk to understand and love us too do I hear an AMEN? Yes this dog Brownie’s Daisy Mae walk into my life one day abused from some one even weeks old people took her home and just did not have time for her so at 12 weeks old found her at a near by shelter brought her home to raise as my you guest it Service Dog for my seizures wow she’s now almost 12 years old and is going blind but still can work out for me she knows all her tasks well and daily does them she’s got some little things but when given the command she stops that behaveour and lays right to my left side always she’s pretty much a good girl terriers are like this at times it’s in the breed but she minds me well so just wanted to let you all know prayers are being sent to each one with these unseen diseases!” YOUR LITTLE PRAYER WARRIOR IN ALL WAYS ME!! Patti Menser <3 🙂
Hey I feel your pain ! Was diagnosed with seizures (Tonic Conic / Grand Mal ) 16 years ago . I am an old lady still not letting anyone except Close Family and friends know ! Ridiculous I know ! There should be NO stigmatization for any kind of illness! We are regular people with an illness ! They are NOT CONTAGEOUS ! I also have several other problems . The worst believe it or not is Collagenous Colitis !
Hi Patti, I do not have a service dog but I have a very intuitive cat. She seems to know when I’m not feeling well from fibromyalgia or migraine. She is right by my side, purring and being very cute. I feel comforted and it even helps the pain a bit. There is definately something to be said about the companionship, service and healing of animals.
Pets do seem to have that sixth sense. My cats always know something is up! <3
Something is very wrong I know it, but no drs will take me serious, I think its due to my insurance, im affraid im gonna die before it gets diagnosed. I also hide, isolate and dont talk about specifics.
=( I understand that feeling. It’s awful. We tend to frustrate doctors and they take it out on us.
Darcy keep a journal that lists your symptoms. I thought I’d never be diagnosed either. I kept going back to the ER and finally lost it with my primary care doc and she started to put my symptoms together. Finally a diagnosis.
Hidden Illness, yea,
not ibs or colitis, no, but rheumatoid arthritis. And fibromyalgia.
That’s a literal pain in my arse!
17years after first diagnosis…
I’ve never been told I’m faking it, which I’m greatful for, but I have had verbals from members of the public when I use my disability badge to park!
-apparently being 38 and using a walking stick is not allowed, how dare I take a space from an oldie, or more needy person.
Let me just tell you…. I have no joint left in my knee, ankle and forefoot, currently waiting on surgery to fuse or replace relevant joints that can be. I’ve already had both my wrists fused, I’ve knuckles that look like boulders, toe joints that could match my fingers, I’m eternally beyond shattered, washing my hair is a feat of engineering, going to the loo….😂😂😂 just try strapping your wrists stiff and wiping yourself!! But adapt I have.
The public are ruthless in their judgement of me because I’m too young to have RA!
(Why arthritis associated with older generations I do not know??)
The meds are gnarly, for RA anti-inflammatory meds don’t cut the mustard, so on methotrexate anticancer drug, and immunosuppressants that DO NOT do the uber fabulous job the tout they will do.
Instead they leave you vulnerable to say the least.
I excuse myself from gatherings if someone has a cold or cough. As a recurrence of nearly dying and spending time in icu is not top of my list of favoured things to do!
I keep my pain to myself, my tiredness, my illness, my meds, doc visits, effects etc etc etc….
I’d feel like I was moaning if I kept saying about it.
So I am a ninja!!
And I’m happy to be one!
X Nic
=( Colitis and lupus here. Autoimmune issues suck, don’t they?
I have ms , I don’t look sick & I hold down a very physical full time job . So people don’t even think I have an illness . If they could only see me by the time I get home . I’m basically good for nothing . My legs are vibrating , tingling so bad I end up on the couch for the rest of the night with my meds . I try to stay physical fit , I do planks , lift weights , walk the dog on his 2 mile walk ( on light days at work ) . I have learned to hide tripping & tippig over . I try to smile at family gatherings , so none knows just how depressed I really am . I am a ninja !
You are definitely a ninja, Mary! <3
But is it good to hide depression? I say that now as I hide my own tears from the other people in the room.
No it is Not good to hide Depression ! It can lead to Serious Life Endangerment Problems ! See a doctor as soon as possible !
When it all began :Back in the spring of 1996 I was 28 and in a loving relationship or so I thought and I found out that I was pregnant with my second child .The pregnancy began just great until my belly started to get very big very quickly so my doctor scheduled a series of blood test to see if I was having twins . I was sitting at the dinner table and my doctor called to tell me that he had the results and right there on the phone he told me I wasn’t having twins I had cancer (yes over the ☎️ he told me ) at that moment my parents , sister and my 7yr old son Ryan were sitting at the table having dinner so I got off the phone with the doctor and he said to come in the following day . At first I guess I was in shock because I stayed quite but after ten minutes I blurted out I HAVE CANCER ! and my parents looked at me my sister who was 13 at the time took my son into the living room to play and my parents went into a emotional frenzy . I was screaming, crying and my mom got on the phone to call my Aunt who was a nurse , the next day I went to the doctors office and he diagnosed me with having a Germ cell cancer called ” An Immature teratoma “. This type of cancer comes from a hormone in balance during conception, he also let me know that I was having another boy and that I had a mass the size of a watermelon. I was told that the tumor was taking the nutrition from the baby so it had to be removed immediately and maybe I should have an abortion because they felt the baby might not make it and I said absolutely No! I said I would leave in God’s hand’s. So , I had the major surgery and my son was moved out of the uterus and placed back in order for the watermelon size mass could be removed . When I got up and was in recovery I thought I had a miscarriage because my belly was so tiny but God had another plan and my baby survived ! I was told that I would probably go into early labor and my baby would be under weight with psychological problems. The following day I began full blown chemotherapy up until the day I gave birth I also went full term up to nine months . When I went into labor and began pushing another mass was located behind my cervix that no one spotted even though I was having sonograms once a week and I had to have an emergency c-section. I gave birth to a healthy 7 1/2lb son who I named Isaiah which was only right he was my little prophet. The following day I began an even higher dose of chemo and radiation I stayed in the hospital and my parents took home my baby and were taking care of my seven year old son Ryan as well because I failed to mention that when I got diagnosed with cancer my significant other bailed out on us he couldn’t deal with it. Eventually I came home and did the chemo/radiation thing for six months then I was done, I was being monitored by all my doctors and I started seeing a holistic doctor as well as my regular team . Boy those twenty vitamins a day kicked my bellys ass and my parents pocket the specialist was out of state and those vitamins were like $75 a bottle . After a year’s time the cancer spread to my colon and liver I needed surgery again so I had a surgery on my colon and needed a colostomy bag for six months and then it was reversed . Those six months were the worst I was very nasty to my family and I wasn’t happy with God I didn’t look at the bag or cleaned it my mom did ” talk about denial”. I was very happy when that crap bag was gone , now I was told that I needed a liver resection because the mass on my liver was malignant 😯 so the doctors decided they didn’t want to take chances so they suggested I have a complete hysterectomy at the same time . That’s the surgery that almost brought me to the pearly gates ! The surgery was 12hrs long and I started to bleed out so they rushed to close me up they had removed part of my liver and the mass along with my uterus and my left fallopian tube because I had the right fallopian tube removed in 1994 because of a cyst that’s why I considered my baby my miracle baby b/c all I had was one tube. I was in the ICU for a couple of weeks in an induced coma my head swelled up to the size of a basketball where you couldn’t see my eye’s . I made sure before surgery I told my parents not to bring my seven year old son to the hospital because I knew it was going to be bad . After almost a month in the hospital I came home weighing 80 lbs. and being in a wheelchair b/c I was too weak to walk . After six months I was put on steroids so my appetite was insane and I was like 140lbs mind you I’m only 4’11 inches tall so I looked obese . I didn’t care because I felt a little normal and I was even able to go back to work and chemo/radiation was done . By this time my son Isaiah was three and the oldest was 10 and I moved out on my own and started to date….. Now the fun begins I had switched doctors, hospitals and was dealing with a new team getting monitored every six months . Now , one day I get up in some real pain like anal spasms and I had no idea what it was so the doctors started me on pain meds which alleviated the pain but left me constipated so their’s that issue. Now my right kidney was giving me problems so I winded up needing a Stent in my right kidney because the cancer spread to my pelvis and another mass grew on my liver . The doctor’s wanted to do another liver resection so here I go back in and they removed part of my liver again along with the mass and I recovered nicely from that fiasco. It’s around 2000 and my cat scans are coming back normal but those bad pains in my gut and those anal spasms are killing me I would feel like I had to go to the bathroom but just bloody flesh would come out (sorry for the details) the doctors ran more tests but nothing abnormal was showing by 2001 another mass grew back on my liver (now you know that when you cut a part of the liver it grows back) so this time I couldn’t have the mass removed because their was a major blood vessel on the mass so I was just being monitored . Now my oldest son graduated from High school in 2008 and that’s when the 💩 hit the fan and basically I started living in the hospital because these gut pains were unbearable mind you throughout those few year’s I was having surgery every 90days for that right kidney Stent that had to be changed hindsight my urologist truly didn’t know what he was doing because the problem I had truly had nothing to do with the kidney . Now we’re in 2012-13 and my GYN-ONCOLOGIST let me know that I had a fistula and it was getting worse and I needed major surgery because I was going into the ER at least once a month and I would stay for a week while they would control the pain . I went on Web MD and diagnosed myself with IBS , CROHNS and every other bowel syndrome because what else could it be besides this fistula fiasco. It got so bad that if I had a drop of water or a grain of rice I would be keeled over in the bowl asking God to take me because the pain was so bad. It came to a point that I stopped eating for enjoyment and would put a little something in my stomach b/c of nutrition purposes only I was down to 90lbs and I stopped the steroids in 2001 so I was skinny . Fast ⏩ to 2013 I again was told about this major surgery I needed and I put it in the back burner because I felt God would cure me 😉 well he didn’t b/c I basically was living in the hospital and now the winter of 2014 comes and the surgery is scheduled but I canceled it b/c I didn’t want to be in the hospital on Christmas so she moves it to January 2015 and I canceled it again because my son aka my chemo baby was turning 18 by this time my health issues were so bad I had months only to live if I didn’t get the surgery . I scheduled it for after my son Isaiah graduated high school , so I was able to go on the college tours but not without excruciating pain but I still went with him along with my sister who was my right 👋 through all this along with my oldest son Ryan . I asked God to let me be well for his graduation and his graduation party as far as me eating and not getting sick and he obliged and I didn’t have any pains on graduation day! Now the next day was another story but it wasn’t that bad that I needed to go into the hospital . My son throughout his 18yrs of life was always monitored health wise because of me having chemo throughout my pregnancy but praise God it didn’t effect him at all . He was the right height , weight and very smart he graduated with honors and got into all the schools he picked . Now it’s the end of June 2015 and I was doing my pre-op testing and meeting with all these specialist and surgeons , I was now told that I would have to have permanent colostomy and urostomy meaning two bag’s and a chance that my vagina would have to be removed and a plastic surgeon would be in the OR if needed . I never cried so hard and long I felt like I’m single woman and no man would ever want to be with me and unfortunately I still feel this way .OK July 15, 2015 arrived and I had my 11hr surgery with 20 different doctor’s , nurses and plastic surgeons in the operating room . Prior to the surgery I made sure my affairs were in order and that God forbid I didn’t make it (being I was given a 50/50chance) that my parents had all my wishes in order and that was the hardest thing I had to do . A month before my BFF started a Go Fund page for me because the expenses of having to pay for a hotel next to the hospital for my family was so expensive being the hospital is two hours away from my house 😯 and as Big as the hospital is as far as being a well-known Cancer Hospital they had not one connection or charity they could point me to. The hotel for my parent’s sister and kid’s cost $2k for a week . Back to me well yes I had the surgery and no I didn’t need to have my vagina removed thank God but yes I ended up with a shit and piss bag and yes that’s my personal humor 😉 I was in the hospital bed for three weeks without walking and two weeks on liquids (not a happy camper) I was on pain , anxiety and anti-depressants Go Me! I don’t remember too much in the beginning except I know that I was in the ICU for a week with monitors and tubes in my 👃. When I was placed in recovery I still wasn’t too aware about these bag’s until I was moved to a regular room and seeing these bag’s put me in a tail spin of emotions. I remember one day I guess I was on so.. many Drug’s I ripped the colostomy bag off and started screaming like a nut . I hated everyone in there that was helping me from the doctors to the nurses to the physical therapist that came everyday to teach me how to walk again being my leg muscles were jelly from being in the bed for three weeks ( A true pity party). Oh! the best news (sarcasm) was that I came into the hospital at 100 lbs and I went down to 80lbs which took a toll on me psychologically because I looked like a woman from a third world country that’s how skinny I was . Anyway they had a therapist come see me once a day to talk about the challenges and changes to my body /life and it really took a toll on me as far as excepting my new way of life .I made sure that I came home so I could help my son pack for college even though I was told by my doctor’s it was too soon to go home I didn’t care I didn’t want to send my baby off to college with a well wish over the ☎️. The hospital made sure a hospital bed was delivered to my home and was set up downstairs in the living room because I couldn’t climb the steps upstairs to my bedroom b/c of my weak legs. My oldest son Ryan carried me upstairs so I could help Isaiah pack I wanted to have some sort of normalcy I felt that was my responsibility as a Parent even though the majority did fall on my family’s shoulder. I helped Isaiah pack even though I was in so much pain, the following day my nurse arrived in the morning she was scheduled to come everyday, when it was time for my son to leave I told him he was the best gift God could give me even though the cause of my cancer was my pregnancy because of my hormones going crazy during conception. The mass started growing during my 1st and 2nd trimester of my pregnancy but I wouldn’t change anything he is my miracle baby ❤️ So my family took him away to college and I ended up back in the hospital the following day because I left too soon and my right lung had collapsed and I needed a blood transfusion so then I was back in the hospital for another month . When I came back home for the second time I had my nurse back helping me out with the caring for my open wound from the surgery and of course the two bag’s my mom stayed with me being my oldest son was rarely home b/c he was working but I still felt alone .I had physical therapy twice a week and eventually I was able to climb the stairs at a slow pace. After a month my mom went back home and after being home for three months I was able to have the hospital bed removed and I was able to sleep in my own bed. I still was depressed 😢 b/c my body was so skinny but after eating plenty of proteins and carbs I was able to gain some weight back . My nurse tried to show me how to change the bag’s but I couldn’t be bothered I felt like I was not ready yet . After almost nine months the insurance said it was time to say 👐 to my nurse and that’s when the anxiety kicked in because I didn’t know how to change these bag’s so she trained my sister and she was able to become my aid and get paid for helping me around the house and everyday errands etc. So here I am fourteen months out and no I don’t know how to change the bag’s and honestly I have no desire but I know in order to gain independence I’m going to have to learn . I feel like this is running my life not me running my life, just taking a shower is not like is used to be I can’t just jump in I have to cover these two bags so they don’t get wet and I can’t even get that right b/c they still get wet. I’m a water person I love the pool and beach along with traveling and I didn’t visit the beach because I don’t know what to wear in order again for these bags not to get wet my freedom has been taken from me . Currently , I don’t know where their’s a support group in my area and maybe I would feel better speaking to someone that’s been living this way for a little while . I just want to live my life with no reservations I want to do the thing’s I did before , wear the thing’s I did before I want to meet someone and fall in Love . I’m sorry I gave you my entire story but I felt in order to understand how and what I’m going through I had to start from the beginning .
Greta, words almost escape me. We think ours is the worst until we hear of another’s. God bless you dear lady and all those who love and support you.
I don’t think I could bear myself to whine now…thank you for sharing. You have truly lived an amazing,crazy, pain filled life. Yet been so blessed and are in return being a blessing. Well to me anyway. I’ve never had the honor of being truly humbled by one who knows what pain TRULY is but can find the energy to share such a private part of your life.
Thank you for telling your story.
Caroline in Oklahoma
This type of illness must be unbearable. My heart goes out to all sufferers.
I have dealt with ulcerative colitis for fifteen years; throughout my adolescence and young adult life. During that time, my condition was a closely guarded secret, being revealed only to my parents and others on a need to know basis. Only this past year, following a series of emotional breakdowns, have I slowly opened up to friends and extended family. In fact, I am coming around to the mindset that I want everyone to know what I deal with (within reason, of course)! Not only does this raise awareness for myself and millions of others, as I share my secret, I find that I am learning similar truths about those to whom I open up, which not only increases my understanding of them but also helps me to feel less alone.
That being said, as I read the infographic, I broke down in tears. My UC is not the worst in the world, but I have spent a very long time hiding my physical and emotional pain. I have become so adept at it that despite working in an open office, with two colleagues currently sitting behind me, I was able to conceal my sobs at my desk and in the palms of my hands.
I guess that’s why I’m a ninja…
My motto where friends are concerned is this…
“Friends talk about sex, but BEST friends talk about poop!”
If you can’t deal with the occasional bathroom anomaly or horror story, I have no use for you. I try to not get terribly detailed, but if we are friends, you’ll just have to put up with it sometimes. On the bright side there’s literally nothing too embarrassing or “gross” that my friends can’t come to me with, and they know it, now!!
Anyone who accuses those of us with IBD of faking it deserve a flaming bag of poo on their doorstep. After all, we have PLENTY of ammo for that, do we not?
can I please have permission to run this in my magazine?–OSTOMY CANADA–email me at lisagaus@shaw.ca