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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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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By: Carolyn Matheson, Master Certified Coach
Last Saturday a special friend was having a party and I really wanted to be fit enough to attend. To be able to enjoy good food and company and be able to laugh my head off.
I have lost count of the number of times I have said yes to friends and needed to cancel at the last minute. I recognize today that I have very limited energy and I must use it wisely. I rested the week before and was relieved to feel good the day of the party.
I have become very talented at putting concealing make up so I don’t look unwell. That of course has its downsides but on this day it was important for me to just feel ‘normal’. I had a wonderful time and treasured every minute I spent at the party.
As I look back over the last six years I can see that my life has followed the path it has meant to follow. I have a rare neurological condition for which there is no cure. Any medication I take just alleviates symptoms; today I don’t think of having this illness for a lifetime one day they may find a cure. I spend a week in hospital every 12 weeks but I don’t think about that until the day arrives. I do try and take each day as it comes.
It is taking time for me to heal, not just dealing with a physical illness, it is the emotional toll that is taking the time to acknowledge and work through in my own way. I have had to get used to a whole new way of living.
When I got sick I felt all my power had been stripped away from me. There are times when I have felt very lost. Doctors continue to provide me with all the medical care I need. I couldn’t ask for better doctors than I have right now.
What I found I needed was to make huge adjustments to all parts of my life. Has it been hard? Yes of course it has. I have struggled with my headspace; struggled to make changes. I have found it difficult to cope with everyday life.
I have had to make some different choices. They are just different. I am not grateful I got sick but I am now grateful for the different opportunities that have opened up in my life. My illness no longer controls me.
It is true that my illness has stripped me bare of everything I know today. I can now look back and truthfully say I have come through with so much more. I am still Carolyn but my whole approach to life is now different. I have integrated what I have learnt on the way as a coach with the emotional high and lows of a chronic illness.
Carolyn a Master Certified Coach and founder of People Work Best Ltd, has worked for 30 years with executives and their teams across the world. She now combines her extensive coaching experiences with writing about her own insights in how to deal with a long term and very disabling illness. It is her mission to empower one patient at a time to take charge of their health. As well as offering one to one coaching, Carolyn is also a professional speaker. Contact: email@example.com; twitter @capcoach; blog www.carolynsmatheson.com
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With Invisible Illness Week right around the corner it has had me thinking what my life is like living with an invisible illness. For me it has been trying to say the least.
I, like so many others who I have talked to, was a perfectly healthy, full-of-energy, lots-of-stamina, wife, mother, and business woman– until one day all of that changed.
When I say “one day” it seemed as though one day I was fine the next my whole world was changed. Not only did it change my life, but it changed my whole family’s life. The wife and mother they knew who coudl– and would–do anything they needed, was now too tired, in too much pain, or mentally couldn’t remember small details that were so important to them.
Here we are six years later and I sit here trying to make this make sense with as few words as I can I can say: I have the utmost certainty that God’s Grace, Mercy and Love, has walked our family through this Journey. It has not been easy. Lot’s of doctors’ appointment, lots of disappointment in trying to find answers. And trying to learn a new normal in our lives.
I think the hardest thing for me was admitting there was something wrong with me and listening to my body; Not worrying about what people were thinking about me.
When you look normal on the outside, meaning you show no outward signs of being sick, you know that people have a hard time understanding or having sympathy to your illness. This is something that I know first hand. I was one of those people.
That I know is one of the things that God wanted me to learn through my own illness.
My family has learned a new normal. We all understand that it may have to be adjusted day by day, but communication and honesty about how I feel is a huge key it keeping a peace around our house! No matter what God is with me always and with Him I can do all things! Maybe not the way I used to, but by His grace I find a new way!
Keri Delphia is a very social person who loves to be around people. She began her career as a hairstylist in 1987 and was passionate about it until she was no longer able to do it in 2007. Now she manages a hair salon part time and enjoys sharing her knowledge with the stylists that are just starting their careers. She has been married for 16 years and has two boys 19 and 9! They are a true joy in her life! She also has 12 chickens and 1 Rooster–quite a hoot and she loves the fresh eggs. She lives with Thalamic Pain Syndrome and has been suffering for 5 years now, but it has just been recently that she was diagnosed. Visit her blog, Pain Free Journey for more writings such as this.
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If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one’s self on the illness and that treatment options available, and then make choices.
But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.
So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:
1. Go with it. Though the seriousness of your illness is significant under your roof, it isn’t that important to others. And there’s no magical conversation you can have with the person that will make him change his mind. The most likely way your friend will accept that your illness is real, is by observing you. For example, your invisible illness may begin to have some visible side effects. When he sees you struggle to get up out of a chair, don’t comment; just let him take it all in.
2. Grow with it. This situation can be a perfect time to reflect on your own perceptions of people. Have you ever stood in line at the bank and thought yourself, “No one here understands how difficult it is to just stand in this slow line!” But nearly 1 in two people in the USA have a chronic illness, so the chances are high that someone standing beside you does understand. Remember that 96% of illnesses are invisible, so watch your assumptions. What situations are your friends going through that you don’t fully grasp? The affair of a spouse, a baby born with a disability, and the loss of a job, are all experiences that can alter one’s life in an instant. Chances are that your friends can use your support and even empathy.
3. Get over it. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don’t do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don’t understand, soon all your friendships will be tainted. Do not take a friend’s lack of empathy personally, even though it feels personal. You cannot change someone’s mind; you can only control your own behavior, so make certain you have conversations that you won’t regret.
4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it’s a healthy one in other ways, it can happen.
The odds are, at some point in your friend’s life, a health issue will occur and suddenly he will have a glimpse into what your life is like. Allow him to feel comfortable coming to you for support and encouragement and don’t use the opportunity to say, “I told you so.”
Go with it. Grow with it. Get over it. Get on with it.
Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.
Lisa Copen is the founder of Rest Ministries and National Invisible Chronic illness Awareness Week, as well as the author of Why Can’t I Make People Understand? Chronic illness doesn’t have to be depressing! Subscribe to receive daily emailed encouragement from the largest Christian outreach for people with illness. Don’t miss Rest Ministries great books and gifts we’ve selected for people coping with illness.
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