The most popular topics about invisible illness seems to be the misconceptions people have about a chronic disease or pain that cannot be seen.
Are there really that many people with invisible illness?
Why another awareness week? Enough already!
You can’t be that sick.
If you were that sick, you wouldn’t be able to stand here and talk to me.
But you look fine to me.
If you just thought about something other than your illness, you’d start to feel much better.
Do any of these sound familiar?
Help increase awareness about nearly any illness (most of them are invisible), by tweeting these facts below and reminding people that situations are not always as they appear.
We’ve found some interesting facts we think you will like and highlighted some few special statistics about invisible illness or chronic pain. You can find sources for our statistics here.
You can follow us on Twitter and then add “RT” at the beginning (that means you are retweeting it) and @invisibleillwk. That way people know the source where you found it and they can sign up for it themselves.
Facts to Tweet About Invisible Illness
RT @invisibleillwk #iiwk12 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #10 About 1 in 4 adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #12 More plp need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO
RT @invisibleillwk #iiwk12 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #16 4 in 5 health care dollars, 78% are spent on people with chronic conditions in USA http://ow.ly/72g4
RT @invisibleillwk #iiwk12 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP
RT @invisibleillwk #iiwk12 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #23 The # of plp in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw
RT @invisibleillwk #iiwk12 Fact #25 Faith gives plp w/ health challenges peace of mind & will to live http://ow.ly/6Otw
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What do invisible illnesses look like? What do we see when we can’t see the pain?
This year’s slogan for National Invisible Chronic Illness Awareness Week (2011) is “DEEP BREATH START FRESH.” That’s kind of what you do when you have one of the many respiratory invisible illnesses like asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult-to-control chronic asthma, plus I have a diagnosed wheat gluten allergy and suffer from rotten migraines.
But you, reading this, may also have one of the thousands of invisible illnesses of your own. One that affects every part of your life, just as my illness affects mine–perhaps, even more so.
- How many times have you felt that you were the only one with invisible illnesses?
- That people didn’t understand you because they didn’t know you because of not seeing your invisible illnesses?
- That people thought you were making up one or more of your invisible illnesses?
- That people just assumed you were okay because you looked ‘alright’ because they couldn’t see your invisible illnesses?
- That being ‘well’ was something you’d never be, or you’d never feel?
- That those around you–your nearest and dearest, couldn’t cope because of your invisible illnesses?
- That you couldn’t cope–you’d had it with the invisible illnesses that everyone doubted?
Probably multiple times, and most likely, most days.
Life with an of the many invisible illnesses harbor a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional, and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.
Therefore, because your illness is chronic, incessant, unending, unstopping– alas, it’s invisible.
Back in February 2010, I wrote a blog post entitled “False Impressions: Do you Look Sick?” In it I wrote this:
When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look? So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations– do we sympathize, empathize, or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.
I suppose, nowadays there are aspects of my illness which make it a bit more obvious.
- For starters I carry a POC (Portable Oxygen Concentrator)
- Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.
But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 12th-19th 2011, many people worldwide are joining together to speak out and speak up for those of us who suffer from chronic and invisible illnesses. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.
The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February 2010 blog post, how should a disabled person look?
Here is something else that you might or might not know about my invisible illnesses:
Every 4-5 weeks a huge stockpile of drugs and food stuffs arrives in multiple bags and I get the chore of piling it all into my kitchen larder!
Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic invisible illness can be like. How many people, for instance would know that about me?
So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my invisible illnesses, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before.
I definitely live a richer, fuller, deeper life now, with my chronic invisible illnesses. Plus I have the closest of relationships with my partner, family, and friends.
And importantly, I have learned one major thing in all my illness and suffering. . .
I have learned the true meaning of compassion.
About the Author:
http://mymusicallungs.wordpress.com is the diary blog of a Severe Chronic Asthmatic, who also suffers from Celiac Disease and Migraines. Susannah somehow manages to teach music part time in her local High School. She is kind and compassionate, and even though her illness is always there, she is always smiling.
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Nearly one in two people live with an illness, and most chronic illnesses are invisible. Conditions such as chronic fatigue syndrome to diabetes rarely have visual side effects that people can see. It creates a challenge for those who live with invisible daily chronic pain, symptoms, and side effects.
For example, though I look fine on the outside, I have lived with rheumatoid arthritis for 18 years. It has been degenerative, despite the best of medical treatments. Recent tests have revealed that I have shoulders that are so disintegrated it’s amazing they still work, knees full of pieces of bone and old blood clots, and osteoporosis.
I have started seeing a new rheumatologist who I hope will more aggressively treat my disease and slow down its progression. I am 42. I told my physician, “My son is 8. I need at least 10 more good years. What can I do to make this happen?”
Despite the detours, I have had the opportunity to build a nonprofit organization of nearly 15 years, to serve those who live with chronic illness, through a Christian foundation of faith. Although I believe God still heals today, He rarely does it according to our schedule. In the meantime, there is a strong need for friendship and support.
Between my family and ministry, I have ample reason to get up out of bed each day and not allow my illness to define me.
I have never given in and allowed it to consume me.
But because I do not enter marathons, audition for reality TV show contests on deserted islands, or sign up for karate class, some people assume I have.
“You’ve just given in to your illness,” I have heard from both strangers and friends. “You need to fight it more.” This is often followed by their specific advice on what I need to do to “fight it.”
What defines “giving in” to your illness? There are a variety of ways that people who do not have an illness define the actions of those who are ill.
1. We are not using the alternative treatment of product that they sell that will make it all go away.
My husband was recently berated by a friend’s wife, “We are so mad at you guys!”
“Why?” he asked.
“Because you won’t try the water!” she replied.
Honestly, I’ve done my research and if I am going to go with a marketing scheme that promotes health benefits for just $200+ a month, it will be the chocolate one. I mean, who doesn’t like chocolate?
2. We are seeking health assistance from doctors or medical specialists.
A friend on recently posted on a social network that he cured himself of a disease by ignoring the “mumbo jumbo of doctors” and asking his dad for advice. He claims he “never gave in.” In his eyes, because I am seeing a rheumatologist with “MD” behind his name, I have chosen to give in. No one cares that my rheumatologist happens to have his own clinic about specialized medicine, and that has written books on the alternative treatments he uses with patients, in addition to Western medicine.
3. We are pacing ourselves.
Chronic illness uses up a great deal of energy and only the one who lives within the body knows what they can and cannot do on particular days. Sometimes we have to give it our best guess and make a choice, not positive if an event will cause us to be tired for twelve hours or four days. When we choose to not attend an outing we’d planned on because we are in deep pain, we frequently hear, “Oh, you are just giving in to your illness. You are letting it control you.” No, we had to make a choice and we did. Healthy people will understand this when they reach about age 80.
4. We are not where someone wants us to be spiritually.
We all grieve, we question, and we sometimes get depressed, regardless of our faith. But if these emotions are noticed by others they are quick to offer the spiritual version of “Don’t worry, be happy.” We are told that we are allowing the sin in our lives to get the better of us and it’s causing our illness. We are not praying consistently, or hard enough, or in the right way. One man recently told me that I needed to try a particular alternative treatment (that he happened to sell) and if I did not, then it was obvious I was just giving in to my illness and really did not want to get well … and that God knew that!
5. We are not doing physical activities that we are expected to do.
If you watch well known magazines written specifically for those with certain illnesses, even they are guilty of featuring people who have the disease but are still able to do extreme physical activities. A person with rheumatoid arthritis may run a 25-mile marathon and are quoted saying, “I chose to never give up.” I have chosen to never give up either, but I am blessed to get my feet into extra-wide diabetic shoes and walk around the grocery store. My own limitations, or those of one who uses a wheelchair each day, is not something that is a measurement of determination or stubbornness about our disease.
Each person who live with a chronic illness knows the daily difficulties in finding a balance between living his life in the fullest way possible, and managing his disease effectively at the same time. There will be many times that our choices do not make sense to people around us. When we hold back from a new treatment or a fun outing, we will be told we are “giving in” and letting our illness define us. And when we take a chance and stretch ourselves, we will be told we are not thinking things through or considering the consequences or risks involved in our choice.
If you live with a chronic illness, only you are capable of making the wisest choice possible based on many factors. If you love someone with an illness, be cautious in sharing your opinion about his or her decisions. If you are genuinely concerned, instead of offering advice, ask questions, such as, “I know you must have given a lot of thought to your decision to (fill in your blank here.) What was it that persuaded you?”
About the Author: Lisa Copen is the author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend”, founder of National Invisible Chronic Illness Awareness Week and Rest Ministries. She is a sought-after speaker who brings joy, humor, and hope, to those who live with chronic illness, from her own 18-year journey with rheumatoid arthritis. This article was formerly featured at the Huffington Post where you can read 40 comments.
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Makeup can cover a multitude of defects; including some of the signs of our illnesses. I notice that when I wear makeup not only do I look better, but my demeanor changes as well. Makeup seems to be a little pick-me-up in the way I feel about myself, even if it is for a short time.
I realize that it may be a sign of vanity; that we should embrace what God has given us. I believe I am just enhancing what God has given me. What I mean is that I am just covering up the imperfections the many years of chronic illness has left behind and shining forth the image that God has originally created.
At the same time I also notice that people will treat me differently when I am wearing makeup. When I wear makeup I look healthier and in so doing I will get the old, “You look so good–you must be feeling better!” Don’t you just wish they would stop at, “You look so good”? When they add the other you feel like you need to explain yourself. “Thank you, but makeup covers a multitude of flaws. I really feel. . .”
Even my doctors will say something like that if I wear makeup to my appointments. When I don’t wear makeup to my appointment the doctor will ask if I am depressed. I will tell him, “No, I just want you to see how I feel as well. The yellowish complexion, the blotchy rash on my face and nose, the dark circles under my sunken eyes, the multitude of colors in my complexion. . .“
No matter what people may think or say, I wear makeup more for me. I seem to feel better about myself. I know it is just camouflaging the outward signs of my chronic illness, but at least every time I pass the mirror the multitude of times I have to go to the bathroom each day, I don’t have to see those many imperfections that my illnesses have left behind.
If wearing a little bit of makeup each day gives me a little pick-me-up then so be it. I just wish people would just stop at, “You look so good!”
About the Author: Michele Williams lives in a beautiful mountain community in Pennsylvania with her husband of 37 years who is a Pastor and Teacher at a Christian school. They have a grown daughter, son-in-law, teenage grandson and three furry children. Through the years the Lord has called them to various ministries in the United States where Michele has been involved in all aspects of church ministry in addition: Pastor’s Wife, Child Evangelism, Regional Women’s Ministry, Wellness Ministry, Speaker, Counselor and Writer.
Michele has experienced various life challenges including living with multiple chronic illnesses since 1985. Some of those include: fibromyalgia, osteoarthritis, peripheral neuropathy, interstitial cystitis, IBS, chemical sensitivities, asthma, sleep apnea, and treated for SLE lupus (among other illnesses). She enjoys encouraging and informing others through her blog: Beelieve You Can!, http://www.beelieveyoucan.net
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“The words of the reckless pierce like swords, but the tongue of the wise brings healing.” -Proverbs 12:18
Yesterday I had a great conversation with a health and fitness coach with whom I recently started working. Not only did she give me some great ideas to work toward my personal goals, but I also found myself leaving the conversation with a lot more hope than I’ve felt in a long time. It’s interesting I should be so hopeful because I’m really having a tough time physically right now. And we also spent a fair amount of time discussing my past history of chronic illness, a topic that usually drains me and makes me sad.
Instead, she was able to focus on the accomplishments I’ve made in the past two years toward a healthier me.
I later realized my coach did a simple yet powerful thing: she used her words to bring healing–healing to my spirit and even to my body. After we spoke I was more inspired to remain on the path of a healthy lifestyle, and I was so energized by hope that I went ahead and started my new exercise program that I’ve been putting off for months because I didn’t feel well enough to try. Which, in turn, inspired me to eat healthy and work out again today. And maybe I’m imagining things, but my current flaring health symptoms seem to be better too.
Recently I’ve had a lot of reckless words spoken into my life and my health situation. Well-meaning family members, friends, and doctors have said things that to some degree, robbed me of hope, faith, and joy. It’s been a fierce battle in my heart to fight off the constant barrage of negativity their words created. What a contrast with my experience yesterday!
This is a great lesson for all of us. Before we share that “helpful” idea or something “the Lord laid on our heart” that our loved one “needs” to hear, let’s ask ourselves if we are planting seeds of hope and healing or if we are truly piercing them with the sword of our reckless words.
“Set a guard over my mouth, O Lord; keep watch over the door of my lips.” (Psalm 141:3)
About the Author: Deanna Nichols is a woman of faith searching for purpose in the midst of a lifetime of physical illness and pain. She has been diagnosed with narcolepsy with cataplexy, polycystic ovarian disease, Hashimoto’s thyroid disease, and many others. Her chronic illnesses make it impossible for her to work or even drive, so she is mostly home-bound. She is on the Board of Directors for her family’s commercial lawn maintenance business, is an avid reader and book reviewer, and uses social networking to encourage people with chronic illness, educate those without illness, as well as to share what she’s learned regarding natural health. She lives in Northeast Florida with her husband of 12 years and their 5 furry children. Read Deanna’s blog A Fragile Faith.
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Acceptance is one the toughest things that anyone of us has to do. Whether we are accepting the loss of loved one, moving to new town because of a job transfer, getting divorced, or accepting that we have to live with sickness and pain, acceptance isn’t easy. With chronic illness, the sooner you accept your diagnosis, the sooner you can work on being healthy.
I know that this really does make much sense but from experience, I know that it is a process and it takes time and trial and error to learn to how to best live with chronic illness.
When I received my rheumatoid arthritis (RA) diagnosis, I promised myself that RA would not win and I remember the feelings of fear, denial, numbness and skepticism. My emotions changed from day to day and even several times a day. Feeling hopeful or optimistic were a long ways down the road and acceptance–well, that was something I never thought would happen.
In the beginning, I promised myself that RA wouldn’t win but all that happened was that I became depressed even though I insisted to everyone in my life that I wasn’t. The only thing that kept me going was that I knew that my children needed me to be their mother and chronic illness didn’t change that. My new RA diagnosis felt like a death sentence and the information on the internet make me feel that the disease would disable and disfigure me in five years’ time and end my life in ten years. A few months after my rheumatoid arthritis diagnosis, I was also diagnosed with fibromyalgia syndrome (FMS) and the blurry reality of what was my life started to become clearer.
I had spent ten years trying to find answers and one day I had them. What I realized at that point was that I had the power to heal because I had already started to find out how by searching for and finding answers.
As a result, I started to educate myself and arm myself with information about rheumatoid arthritis and fibromyalgia that made sense. I sought support from others who were living with the disease and I knew that if I wanted to get better, I had to accept that a handful of pills weren’t enough.
Looking beyond the physical symptoms
I also looked at my life as lesson after lesson of patience, strength and survival. Having RA and FMS were the same as any other struggle that I faced in my life and they would probably be easier than some of those struggles. When I looked at my diagnoses as just another thing that made me who I was, I learned to accept that I had no control of what happened but I had control of the response as I had when other obstacles impeded my life.
Of course, it wasn’t easy to get to that point because living with an invisible condition (or two or three or more) isn’t that simple. And steroids, a lack of energy, physical pain, and weight gain can take a toll on you and blur your perceptive.
You lose a lot of friends and there are a lot of people who don’t understand but what the illness doesn’t control is how we respond, how we fight back and how we go on the defense against the war waging inside our bodies. The disease doesn’t get easy but we start to realize how exceptional we are to be able to overcome so much.
Why you should accept your chronic illness diagnosis
One you are diagnosed with any disease, invisible condition, and/or chronic illness, it will always be a part of your life and the sooner that you accept your diagnosis, the sooner you can learn how to live with your disease. It is also how you will cope and how you will learn to understand that your diagnosis isn’t a death sentence. The only thing that your diagnosis has to be is something you have to live with and once you accept it, you can learn how exactly you will do that.
Chronic illness is kind of like life with its all ups and downs but living with an invisible chronic disease is like life multiplied and so very complicated. It is never ending roller coaster of pain and emotions.
There is also about a lack of understanding amongst your family, your friends, your coworkers, and even complete strangers. It is about living life without knowing what tomorrow will bring and it is an emotional battle on a daily basis. Moreover, it is a bitter pill to swallow and unless you accept all these things, you will never be able to get past your diagnosis.
How you accept chronic illness in your life
In order to accept chronic illness, take a look at the advice you have received–pace yourself, manage your condition well, educate yourself, advocate for yourself, surround yourself with emotional support and don’t let the disease define you. This advice is your guide through the roller coaster of symptoms and emotional setbacks. The only thing that can prepare you for that next flare-up is experience.
There will be days where your pain and fatigue are under control. There will be days when you feel productive and that you are in control of your life and your body again. It will not feel like a death sentence forever. On the other hand, there will be days that it will feel like the disease is in control when you are in pain, you are tired and you can’t focus or get anything done. The disease doesn’t get easier but getting through those really bad days does get easier.
Make conscious decisions
As a long time sufferer, I have learned that there can be more good days by making good choices. You have to do all the right things like eating right, taking your medications, being active on good days, and resting on bad ones. It is a learning process like anything else in your life and the setbacks–they are part of life too. You can’t control the setbacks regardless of how well you plan and a flare-up can come on at the worst possible time.
All you can do is wait to feel better and you can’t always predict how many good days you will have so try not to overwork yourself because you don’t know when your next good day will be.
Accept that it’s not all in your control
Understand and remind yourself that a chronic illness is unpredictable. There is not much that you can do except to realize you have to adjust and adapt to the moments that the disease brings havoc to your life. While it doesn’t define you as a person, it can still define your life.
The best thing you can do for yourself is to accept that you have to be flexible to live successfully with your chronic invisible disease. The disease might be your new reality but learning to be flexible means that you accept chronic illness in your life not that you give up. Your life will never go back to “before your diagnosis,” but it can get close to it if you open your mind to what you need to do to get to that point where you can accept diagnosis in a way that means you don’t give up.
About the Author: Lana Barhum is an advocate for two online support groups, one for arthritis and the other for fibromyalgia. She was diagnosed three years ago with rheumatoid arthritis and fibromyalgia. She also works in the legal field and is a mother two very active boys. She has a blog titled: “Living Life As I See Fit” where she writes about living life with chronic illness.
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Taking a little time to come with ideas for how to handle a crisis is a valuable exercise for anyone living with a chronic, invisible illness. After all, to live with a chronic illness is to know that a crisis will come your way at some point. This list comprises the things I’ve learned about how to cope when life throws you a curve ball. As I’ve matured and had to learn how to deal with changes brought about by chronic illness, it has become easier and easier to cope with things I never thought I could handle.
By focusing on breathing I can keep myself in the moment and stop my brain from running wild with all the “what ifs.” It’s always the best place to start when something goes wrong.
(2) Focus on being rational and maintaining perspective
It’s in my nature to start flipping out during a crisis. It takes a concerted effort to keep myself thinking rationally. I do my best to keep reminding myself that I can handle whatever has been thrown my way and that freaking out does nothing but make me upset. The older I get the easier I find it to do this. I used to completely lose it and go into hysterical crying with any crisis. I still do that sometimes, but much less often.
In addition to my husband, parents, and closest friends, I’m part of a fantastic, close knit message board of women who provide the most amazing support both day-to-day and in a crisis. It’s like our own little Internet family. I don’t know what I would do without them. The online migraine and chronic illness community is an incredible source of support, too.
Discussing your situation with people who truly understand because they are living the same thing is amazing. Turning to other people also often helps me discover options and solutions I would never have thought of on my own.
(4) Ask for help
This is hard for me. I don’t like to need to ask for help. I want to be independent. But when push comes to shove sometimes it would be downright stupid to suffer silently when someone who loves you could do something to make things easier for you. Not everyone is lucky enough to have a supportive family or group of friends. Since I do, I should let them help me. They want to.
I have a scary tendency to chastise myself for any part I think I might have had in bringing about a crisis. For instance, if I’d only tried harder I wouldn’t have lost my job. Never mind that I was dealing with three years of constant migraines when I quit working. It’s much easier to deal with a crisis if I can have compassion toward myself and remember that most crises are just a fluke rather than something I deserve for being a bad person.
In conclusion. . .
Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.
About the Author: Diana Lee lives with chronic migraine disease, occipital neuralgia, diabetes, polycystic ovary syndrome and depression. She blogs about living with chronic pain, migraines and depression at her site, Somebody Heal Me, and interacts with other patients on Twitter, Facebook and Google+.
She is a licensed attorney, but is currently on disability because of the frequency and intensity of her chronic intractable migraines. She is married and mommy to two furbabies, Felix the cat and Maisy the Jack Russell Terrier. She loves reading, mindfulness meditation, watching college football and basketball, reality TV, laughing and being an advocate for other patients.
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Last year hundreds of people participated in our “30 Things Meme.” We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).
This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?
Copy the 30 things meme below, fill it out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.
And don’t forget to let us know about it! Fill out the form below (scroll down past the meme) with name of your blog and where the meme is posted so we can come read it!
Thank you for participating and spreading the word.
30 Things About My Invisible Illness You May Not Know – 30 Things Meme
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
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Most of us with a debilitating chronic illness, if asked, would admit that as we traveled along the journey of life, we never saw this train called “Limitations” coming and if we had, we certainly would moved heaven and earth to get out of the way. As children we dreamed of what our lives would hold and who we would be, encouraged by those who loved us to dream big and wide. But what do you do when the life you have so carefully been creating and carving out begins to fall apart around you because of your illness?
What happens when you are no longer able to hold down a job five days a week, so you go to four, then three, and then even two becomes too much.
I was there four years ago and it was the scariest and loneliest time of my life. After twelve years of being sick, I could no longer manage many of the simplest tasks of daily living, which included holding down a steady job. Eventually, my disease, which was undiagnosed at the time, progressed to the point that I was unable to hold my arms above my head for five seconds at a time or walk more than a few hundred feet.
However, mounting medical bills and household bills still had to be paid. After pushing my body to it’s limits—I finally conceded that I had no choice but to recreate my lifestyle and find a way to work from home.
While some may see this as a luxury, for many with chronic illness it is the only way we can survive. What and how recreating your lifestyle looks like will be dependent on many factors:
- Your current field of work: Is it suitable for a work-at-home environment?
- Your relationship with your employer: Are they flexible?
- The way your home is set up: Do you have room to work from home?
- Your financial situation: Do you have funds set back to start up a small business if needed?
- Access to equipment: Do you have a dependable computer/laptop, printer, phone, etc.?
- Your abilities: What are your talents, gifts, and skills that you could use to start a small business from home that would work with your physical limitations?
Once you have carefully taken all these factors into consideration, you can begin putting a plan into place that works for you and your family. As you recreate your lifestyle, the challenges you live with on a daily basis won’t go away—but they will become more bearable. When your body is wracked with pain, you can work in your pajamas propped up in a cushiony bed. Instead of sitting at a desk in an office chair all day, you can create a “desk” space around a sofa that is more comfortable with a laptop and a laptop stand.
I started transitioning into this change in 2005, and made the permanent lifestyle change in 2007 when I opened my business, Hilton Head Nannies. Having a chronic illness and living with daily challenges, pain, and limitations certainly isn’t the life I signed up for when I dreamed about my future as a child long ago. However, I am a firm believer that there is a purpose in every serious/chronic illness and a story to be told as God’s plan unfolds. I am still learning to embrace God’s plan for my life. Each day as I turn to Him and ask for His help in recreating my lifestyle, I am finding joy, peace, and hope that break through the disease and pain and make me dream like a child again.
God bless you as you pray about what He has in store for you! Jeremiah 29:11 says “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.’”
Jennie Krogulski resides in beautiful Bluffton SC, just off the coast of Hilton Head Island. She lives with Dermatomyositis, Fibromyalgia, Toxoplasmosis, Hypothyroidism, and an iron absorption disorder. Jennie owns Hilton Head Nannies, a national placement agency, and most recently started a social services agency—Lowcountry Family Connections. Jennie delights in spending time with family & friends, and being “Jen Jen” to the many children in her life.
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What else can you see?
Because you can’t see past it.
I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.
What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.
This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.
One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.
I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!
The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.
So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.
Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.
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