Archive for August, 2008
As is our tradition, we are printing an article on Sunday that we hope your church or other religious organization may find helpful. This article is free to reprint; just keep it “as is” includig the footer at the bottom. Thank you!
. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Rest Ministries, the largest Christian organization that specifically serves the chronically ill, recently did a survey and asked people to “List some of the programs or resources a church could offer to make it more inviting comfortable” They have provided a sampling of some of the 800+ responses, all of which could be done in 20 minutes or less.
1. Send out encouraging emails.
2. Make sure the handicapped stalls in the restroom are functioning and clean.
3. Add padded chairs or cushions to make church easier to sit through. Room for wheelchairs is always a need and don’t forget to include extra places for family members.
4. Have an open mind about a support group for the chronically ill like HopeKeepers. It would make me feel very special that there was an understanding of people’s needs that are not always visible.
5. Add more disabled parking, even if they are temporary spots.
6. An awareness on the part of the ushers that those arriving late may have difficulty walking or getting out of cars.
7. Have a couple of people who could call chronically ill folks and check on them when they can’t make it to church.
8. When suppers are given, I may need help getting my meal, or at least understanding I cannot wait in a long line.
9. Be cautious when hugging. It may topple over or hurt a person.
10. Have a video tape of the service, not just a live web cast. Not all our computers work that well.
11. Check out the church doors and see if someone with an illness can open them with ease. If not, install a mechanical button to push them open.
12. Please don’t tell me that if I really believed and had faith I would be healed by now. And don’t insist how wonderful I look, because I know for a fact that I look terrible and miserable that day.
13. Offer ways to serve within the church that can be performed regularly, but not on a set schedule so that I can still contribute, but there’s enough flexibility that I can do the job when I feel well enough to do so.
14. Provide sermon notes in case I can’t make it to the worship service and want to listen/take notes later.
15. Acknowledge National Invisible Chronic Illness Awareness Week. Rest Ministries
16. Just mention chronic illness occasionally! Don’t forget to talk about it in sermons as one of the challenges many people face just like unemployment or divorce.
17. Let me know about Christian volunteers from church that will clean house for small fee. Some have offered to clean my house, but I am not able to accept charity yet, but neither can I afford to pay a regular house cleaning service.
18. Have the church help with some of the small costs of providing encouraging books and resources for the church library. The chronically ill often cannot afford all that they’d like to read and will check them out.
19. Remember how many caregivers are in the church, not just caregiving for their parents, but also for their spouses or ill children.
20. Have copies of sermon for free on CD or computer.
Get a free list of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen, just signup for to HopeNotes invisible illness ezine at Rest Ministries. Lisa founded of Invisible Illness Week
Read Full Post | Make a Comment ( 1 so far )
Is “Dear Abby” Confused About Invisible Illness? Why Not Give People the Benefit of the Doubt Sometimes?
Oh, Abby! We need to talk. Two posts in one week that have to do with illness… and your responses were less than, well, I hate to say it, but educated. We don’t know if these women are really ill, but give them a little bit of the benefit of the doubt, could you?
My assistant recently brought these 2 “Dear Abby” letters to my attention — and Abby’s response. Needless to say, it made me a bit sad. We thought we would post our own comments and get some feedback from you!
Sometimes we wonder why our friends and family don’t understand. Is there any doubt when this is the kind of thing they read in their daily paper? They hear people spout off using words like, “psychosomatic quirks,” “textbook hypochondriac (who denies it, of course,”) “her hypochondria is so irritating,” “she lives to be sick. She is always in the emergency room for something.”
Abby’s responses aren’t much better: “she may have a complex emotional disorder rather than a physical illness,” “stop enabling her,” “every time you see her, tell her she looks TERRIBLE; you’ve never seen her look worse. It’s what she’s ‘dying’ to hear, and she’ll love you for it!”
Read my comments below the articles… and then WRITE DEAR ABBY about what it’s like to daily live with hearing “but you look so good” or “the stares you get from parking in a handicapped spot.”
And do me a favor? Mention National Invisible Chronic Illness Awareness Week… because everyone just needs to be a bit more AWARE… even Abby.
DEAR ABBY: How do you deal with a hypochondriac? My brothers and I lost our dear mother to cancer
when we were in our teens. Daddy has recently been diagnosed with a pernicious form of melanoma, which has a low survival rate.Our father has been married to his second wife, “Doris,” for 20 years. Doris is a textbook hypochondriac. She denies it, of course, and insists that her health is bad. So bad, in fact, that she didn’t see the irony of telling my sister-in-law, who was undergoing chemotherapy for lymphoma, that “no one understands what it’s like to live with a chronic condition.” Doris was referring to her allergies!
Now Daddy is battling cancer. He and Doris came to visit his three children and multiple grandchildren. Doris talked about her head cold the entire visit, and our time with Daddy was cut short because she needed to be driven back to the hotel. (No one else could detect her symptoms.) I’m sure Doris loves my father, and after 20 years of marriage, they’re certainly used to each other.
But now that Daddy is facing death, I’m having trouble supporting Doris’ emotional needs because her hypochondria is so irritating. Still, Dad wouldn’t want us to abandon his second wife, despite her psychosomatic quirks. What do you suggest? — NEEDS HELP UP NORTH
DEAR NEEDS HELP:
You can try talking Doris out of her hypochondria until you’re blue in the face, but it will only make her try harder to convince you that she’s sick — so stop trying. Instead, every time you see her, tell her she looks TERRIBLE; you’ve never seen her look worse. It’s what she’s “dying” to hear, and she’ll love you for it!
>>> OUR COMMENTS
Okay, so maybe it wasn’t the best ettiquette to tell someone going through chemo that “no one understands what it’s like to live with a chronic condition” when referring to her allergies. And there are people who really want it to be “all about them” regardless of what othes are going through. But if you’ve ever had chronic allergy problems, it can impact your life a great deal. And her feeling like “no one understands” doesn’t mean that she is a hypocondriac!
Just because no one else could “detect her symptoms” doesn’t mean it didn’t feel like her head was about to burst. Or maybe, just maybe… she thought her husband was getting too tired being around the entire family and 3 grandchildren, and instead of embarrassing him and his failing health, she used her own allergies as an excuse to get out of there so he could rest.
Either way, she is suffering and feeling alone. And having her spouse facing death, may make her feel even more alone and scared. It may even be making her allergies worse (crying a bit more perhaps?)
Plus, let’s face it, it’s true… for those of us who deal with chronic conditions daily and have to learn to cope with the pain, and pushing through every hour of the day, frankly, it can be a bit disheartening to see people who are coping with cancer have an outpouring of sympathy and practical help. It’s not that we don’t want them to receive it… we just kind of selfishly wish someone would be sympathetic to us now and then, or maybe just bring over dinner.
Abby’s response to just “tell her she looks terrible” may in fact help validate this woman’s feelings. But it’s not because she is making up her chronic condition and wants attention. She just needs some validation that she is hurting too. Abby, your sarcasm isn’t real classy!
Kara, my assistant, made some good points too. “‘Allergies’ could be much more severe than people realize if they’re allergic to enough things, like multiple chemical sensitivity. On the one claiming to have cancer, having people from church cleaning her house and yet planning an active vacation, it could be active for her family while she sits on the sidelines.”
DEAR ABBY: I’m afraid my best friend’s daughter, “Kami,” may have Munchausen syndrome. People with this condition consciously fake the symptoms of a physical disorder.
Kami is 30, a former nurse, and married with a toddler. She lives to be sick. She is always in the emergency room for something. Kami often claims she has cancer and is dying. In fact, she recently told me proudly that she had “died” twice. Ladies from her church clean her house and bring her meals because they think she’s at death’s door, yet Kami and her husband are planning a water-skiing and snorkeling vacation.
Kami’s husband and parents are extremely protective of her and become defensive if anyone suggests that Kami may not really be physically ill. A sister-in-law who mentioned Munchausen is no longer spoken to.
The final straw for me came when she arrived late to a wedding, making the grand entrance in a wheelchair, and by the end of the night was on her feet swing dancing at the reception. She’s losing friends, because to be friends with Kami means you are completely invested in her illness. Most people are staying away. She exhausts us. I care for this young woman and her family, but don’t know how to help her. Have you any thoughts? — WORRIED FRIEND IN UTAH
DEAR WORRIED FRIEND:
Until Kami’s family is ready to recognize that she may have a complex emotional disorder rather than a physical illness and stop enabling her, there will be no help for her. However, has anyone taken into consideration the effect Kami’s endless dramatic crises are having on that toddler? When a parent is continually at death’s door, attention that should be devoted to nurturing the child is diverted from where it should be.
So, we’re assuming that it’s believed that someone couldn’t arrive at an event in a wheelchair and later be on their feet dancing? Ever heard of rheumatoid arthritis? Multiple sclerosis? Any number of illnesses that are impacted minute by minute?
The fact that “Kami’s husband and parents are extremely protective of her and become defensive if anyone suggests that Kami may not really be physically ill…” may in fact be because she is physically ill! Perhaps they don’t want to share about her illness with the worldright now. Or maybe she doesn’t even have a specific diagnosis yet and the family doesn’t want to be questioned about it all the time.
The fact that the people who are closest to her and see her on a daily basis are protecting her gives her physical challenges some credibility with me. And Munchausen syndrome, though it does exist, is one of those things you see on Dateline and then everyone starts assuming they are a witness to it.
And what about that vacation? Abby’s response that the kids should be thought about too. We go visit family and go out in the boat, but I haven’t waterskiied in 15 years! Sometimes I can’t even ride in the boat, because I can’t get in or out, or it’s too bumpy on my joints. Perhaps, despite this woman’s illness, she is pushing all her energies into giving her family a vacation of their dreams (while she sits on a lawn chair and watches) is one way she is showing them her own illness won’t slow them down. I do it all the time.
We can’t really win, huh? If you’re “ill” you should “stay home” but then also deal with the guilt of not giving your kids all the experiences they should have. If you plan a vacation so your kids can have some fun, then you “can’t really be that ill.” How many of us have sat on a bench while our family ran around an amusement park? Have you rented a scooter and tried to pace yourself? Have you tried to grab a nap while the kids went to the pool.
Our last trip to Disneyland my mom and I shared a wheelchair. By 3 p.m. she ended up at the ER to get some fluids because with her diabetes she had gotten dehydrated. By 5 she was back at the parade where we saved her a spot. “Vacations” are not your typical vacation when you are healthy vs. ill, but it doesn’t mean we shouldn’t be allowed to take them without letting people think we aren’t really ill after all.
Kara, who was a nurse before my assistant, and has MS, also says, “You can ‘die’ in the ER and be brought back because you have a severe allergic reaction, like to ingredients at some foods at restaurants (I know someone who has coded multiple times due to this.) As for coming to the wedding in a wheelchair and then later dancing… when you have an illness that severely limits your energy–that can be the reason for a wheelchair. You can either be “saving your energy” for dancing or actually feel better later unpredictably–MS is very much like that. Most people are aware that if someone is in a wheelchair at times and then not at other times, especially on the same day They can totally misinterpret that.
Got a response? We’d love to hear your comments below!
Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek.
San Diego, CA — (SBWIRE) — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming nearly 1 in 2 people in the United States live with a chronic illness. So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of people have invisible illnesses.
National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.
The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars include:
- Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations
- The Civil Rights of Patients with Invisible Chronic Illnesses
- Overcoming Self-Defeating Behaviors
- Secrets of Paying for Medical Care
- How to Get Paid to Blog
- After the Diagnosis: The Journey Beyond
The theme this year is “Hope Can Grow From The Soil of Illness.”
Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.
“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”
She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible.”
Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.
Find out more information and receive daily updates at http://www.invisibleillnessblog.org
National Invisible Chronic Illness Awareness Week
I used to be told “We’ll call you if something isn’t right with your blood work.” Then one day, several months after labs and well into feeling like the living dead, I got an urgent call from my doctor. It was bad news.
I was good. Like the excellent dishrag patient that I was, I waited. I assumed.
I was wrong.
It was a mistake. A mislaid paper on a busy desk. Just another lab.
Because of the long delay, I was very, very sick and it took a long time to get better.
Now, I always call for verbal results and paper copies of my labs or tests to be faxed to me. It’s a rule in our house and all my doctors know I insist on this kind of ‘open relationship’ with them. I keep a notebook of labs and test results so I can cross check between my doctors and provide them with missing paperwork if needed. I know what tests were requested and have a say in them. I know the results and the ‘norms’ for the tests because I’ve talked about it with my doctor and looked it up for good measure. I never, ever take anyone’s word- “everything’s fine.”
I am a difficult patient by most anyone’s standards because I am high maintenance and time-consuming. Most people with chronic illnesses are.
Why do I do this?
Doctors are people too. Labs are imperfect because they are run by people who don’t always read up on the current acceptable statistical ‘norms’. Nurses are busy, busy people, and sometimes… well sometimes things just ‘happen’.
Checks and balances. It’s their job to order the agreed upon test, the lab’s to do it right, and mine to be sure all the I’s are dotted and T’s are crossed. Check, double check, triple check. It’s easy to be forgotten or laid to the side when you suffer an invisible illness.
Do you know what labs or tests you had run and why? Do you know what the current acceptable normals are for those tests? Do you wait for your doctor to call you with lab results?
Diana from SomebodyHealMe asked this last question recently, and I couldn’t get it out of my mind. Here is her blog post which includes some multi-media which I’ve not yet even had time to listen to. I hope you enjoy it!
Thanks Diana for a thought provoking errr invading post.
Invisible Illness Day- September 8, 2008. National Invisible Illness Week is worth blogging about!
Ellen Schnakenberg is living with purpose, facing the ups and downs of misunderstood chronic illnesses of genetic origin, and knows a little about struggling… and guilt.
“I have a choice in everything that happens in my life. I will not be a victim. I can choose to be defined by the pain and disability of my illnesses, or choose to go beyond simply surviving and make my experience mean something. I watched my small children one night, quietly sleeping in their beds, and knew what my choice had to be.”
Long ago, Ellen and her husband moved to a farm in Missouri to concentrate on family and follow a dream. She is a writer for WEGO Health http://community.wegohealth.com/ where you can find her blog.
Ellen shares her life with her husband and 2 college-aged children, her beautiful Arabian show horses, and a menagerie of dogs and cats. Her her trusty guard dog ‘Beast’ ever at her side.
Read Full Post | Make a Comment ( None so far )
About Invisible Illness Week Seminars
(1) We have 20 speakers, the times will be 9 a.m. noon, 3 p.m. and 5:30 p.m. pacific time USA, we’ll give you a link to a time converter. Awesome guest line up!
(2) Due to the overwhelming response of all of you coming (and we still have a week’s worth of press releases to go out…) we are going to move our seminars over to Blog Talk Radio. I know some of you are going to say, “Oh, bummer! I wanted to be able to call and just listen and not mess with the computer!”
I understand. I tried every way to make it work, but here is what using Blog Talk Radio will mean for you:
- Speakers will still call in on the phone just like we’d planned. You’ll still hear them live!
- Listeners will log on to an area of our web site to listen. So make sure your speakers are working. If not, this weekend may be a good time to get your local teenager over to your house and test them out.
- Listeners will feel like they are listening to a seminar and then at the end people can call in and ask their question “on the air” or they can send it via an email text.
- It’s free – for everyone! No costs are involved.Here’s the gist: The one company I thought we would use provided some wrong information about “access lines.” So… the only option was for us to purchase calling cards for $5 or and then send these out to people who could not afford long-distance. We didn’t want money to ever cause someone to not be able to attend. Plus, our international friends would have had to figure out their expenses or buy calling cards for decent rates. Honestly, this was just going to get to be messy. And we would have been charged by the minute, per person, per seminar, so… over 1 million minutes which would have put us into the $7,000 range.
ACK! Can you imagine? We could have flown ya’ll out to San Diego for a real conference!
- We can reach more people!
With 20 “programs” we can flood Blog Talk Radio with some excellent seminars and let more people know they are not alone in living with invisible illnesses. The telephone seminars filled up at 97 people. After that it would have cost $99 per SEMINAR to raise that number. With the publicity we are getting, we want to make sure as many people who come have it accessible.
- It will be really easy to listen later, everything will be archived automatically.
So! Join me in getting excited about the possibilities! I know it will be an amazing week. Speaker topics and their bios will be announced this weekend. I am announcing the first round of prize recipients! So good luck!Read Full Post | Make a Comment ( 3 so far )
Often with an invisible illness, when you are managing to get around and do things, people don’t see you as sick. This can be incredibly frustrating, but it also gives you the chance to decide whether or not you say that you are sick. You may want to avoid this or say you are not sick for specific occasions, such as meeting someone new or at a job interview, or you may decide to not define yourself as sick. Perhaps you prefer – as someone I know does – to consider yourself disabled, or perhaps you prefer to consider yourself as someone who isn’t sick, but just has health issues.I started getting severe headaches aged about 8 or 9 and by the time I when to secondary (high) school these had developed into migraines. I remember being taken into the big kids’ classroom at junior school so I could lie down in their reading area while waiting for my Mum to pick me up. During secondary school, I spent quite a lot of time in the nurse’s room or being taken home from school with yet another migraine. My friends joked about me always carrying medications and I ended up first on preventative meds and then having to see a holistic doctor to help get control of the migraines (chocolate, caffeine and lots of other foods contributed as triggers).
But I never thought of myself as sick. I was just a kid that happened to get migraines. Maybe I didn’t think so much about it because they run in my family,
When I was about 13 or 14 I started getting excruciating pain in my knees sometimes as they gave way when running up stairs or turning corners. I didn’t think much of it, learnt to twist and shake the leg until my knee felt right and then continue on my way. My parents both had issues with joints not doing as they should so I thought little of it. But I now recognize the signs of subluxations, a part of Hypermobility Syndrome. I did not think of myself as sick – or disabled – in any way. It was just something annoying that I dealt with.
Around that same age I started getting lower back pain and was diagnosed with having too much of an arch in my lower back – something I now know is called hyperlordosis. My Dad has the same problem and I thought little of it. It was just another annoyance that I had to deal with. Physiotherapy exercises helped but I found them boring.
It was only after I developed severe IBS and Fibromyalgia Syndrome (Fibro) when I was 21 that I started to think of myself as being sick. The IBS, which was the worst symptom for some time, probably had something to do with this, as catching an infection is definitely being sick in my book and that’s how my IBS started. The rapid development of my Fibro symptoms also made me think I was sick. It took me a few years to get a Fibro diagnosis and during those years there were plenty of times when I thought or hoped that I had something simple that could be treated – that I was sick but could be made better.
After I worked out what I had – a chronic illness – I slowly came round to the idea of being disabled as well as sick. But then I finally found a good doctor and got control of my Fibro. It’s only occasionally a real problem now, mostly just being there at such a level that I’m not sure what’s Fibro and what’s being normal-tired and normal-unfit.
I don’t think I’m sick now really. I still have a chronic condition but it is managed. I’m not really disabled by it. Am I back to being just someone with health issues? Possibly.
National Invisible Chronic Illness Awareness Week is a fantastic way of raising awareness that many people may look well but have a chronic illness.
After developing Fibromyalgia Syndrome (Fibro) whilst in her final year of University, Lindsey Middlemiss got involved in the online community and became a patient and awareness advocate through blogging and moderating on forums. Applying research skills learnt at Uni to Fibro, she delved into what is known about Fibro and is now a Fibro patient expert.Lindsey has set up a new charity in the
UK for Fibro Awareness – FibroAction www.fibroaction.org
UK for Fibro Awareness – FibroAction www.fibroaction.org
- which aims to make up-to-date and accurate information about the condition readily available to everyone, as well as improve public awareness of the condition.Read Full Post | Make a Comment ( 1 so far )
Chronic Illness Week: What Is An Invisible Illness
National Invisible Chronic Illness Awareness Week, September 8-14, has announced the 2008 theme: “Hope Can Grow From the Soil of Illness.” Lisa Copen, founder, says, “Illness can signify the loss of one’s plans and even dreams, …
Girl-Woman-Beauty-Brains-Blog – http://www.girl-woman-beauty-brains-blog.com/
http://thehealthymoms.blogspot.com | email@example.com | 126.96.36.199
Healthy Moms will be blogging for invisible illness awareness week. On Thursday my first post on the topic will be published. It is just going to be your press release with my comments to let my readers know about your cause. I will probably make one more post on the topic before September 8.
http://kitrona.blogspot.com/2008/08/invisible-illness-awareness.html My first entry, with more to come. From Are You Blogging for Invisible Illness Week Awareness?,
Because I have what is known as an “Invisible Illness” I have Peripheral Neuropathy in arms and legs. PN causes 24/7 pain, some generalized, some tingling, feelings of electrical shock and stabbing pain, numbness which can cause us to …
Stitch ‘n Frog Crochet, Knit, and Stuff – http://blog.360.yahoo.com/blog-qgW50WM2eq_FTtR.HOXoDro-?cq=1
Invisible or Not
By Jo Franz(Jo Franz)
It’s called National Invisible Chronic Illness Awareness Week and it is this coming September 8-14. There you can find all kinds of telephone seminars, blog posts, freebies, events, and networking with people who understand the …
God Lives – http://jofranz.blogspot.com/
Invisible Illness Week, September 8-14, 2008
There is no sign of the illness existing, nor (at least not until the debilitating stages) the use of an assistive device like a cane or a wheelchair. National Invisible Chronic Illness Awareness Week, September 8-14, 2008, …
Dust Bunnies And Books – Homeschool… – http://www.homeschoolblogger.com/dustbunniesandbooks/
National Invisible Chronic Illness Awareness Week is held annually …
By Jonnie Wright
Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.
Tidings – http://www.jonniewright.com/blog
Invisible Illness Week Sept 8-14th
By Noelle Mena
National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them. A few ideas to write about: …
Take Root and Write – http://www.Takerootandwrite.com/
Read Full Post | Make a Comment ( None so far )
It’s funny. I’ve always worried a lot about fitting in, even before I was diagnosed with lupus and rheumatoid arthritis. About what other people are going to think of me. More recently, about the visual cues that signal illness.
Ironically, though, one of the things I really haven’t bothered to hide are the bruises I get from having blood drawn. Whether it’s two vials or 20 doesn’t seem to matter. I’m fair-skinned and my prolonged adventure with steroids has increased my bruising ability.
Similarly, It’s pretty hard to hide a cannula that’s in your arm for three days while you’re getting solu-medrol infusions for two hours each day. Yes, this scheduled in between the final exams and papers of my first year of graduate school. Just one of the many ironies that comes with being diagnosed with an invisible, chronic illness at the age of 22.
I know that for some people, my friends included, this is just too much “medical stuff” invading their perfect world of health and harmony. I know these things don’t make the “typical” graduate student.
Certainly, though, there are things I have made an effort to hide. The cystic zits that invaded my formerly acne free face while I was on prednisone was one thing. I finally decided to invest in some good cover-up, not so much for other people, but for myself. It’s hard enough to do deal with a changing body, both physically and mentally, let alone a changing face.
On the other hand, if we can’t show our scars and our wounds, then people are only willing to accept the healthy versions of ourselves. And being honest with ourselves, this is not always the way things are going to be. It may be the image we want to project, but it’s hard to project a false image built on lies when we don’t have much control over the situation.
There seems to be a constant conflict between fitting in and sticking out like a sore thumb. On the one hand, no one wants to wear their limitations on their forehead, displayed for all to see. On the other hand, fitting in perfectly and not “looking” ill has its own set of complications.
Sometimes people don’t believe that I’m sick or they don’t understand the severity of the situation. People don’t understand why I can’t just take a Tylenol and get over what is ailing me. I think it’s especially hard for people my age to imagine something lasting forever. I try to explain that I’ll vacillate between better and worse, but I won’t ever be “perfectly healthy” again. This is something, that, especially when I appear so seemingly healthy, people find impossible to understand.
I think what I’m starting to realize is that just as I don’t owe anyone an explanation for why I became a vegetarian over six years ago, I don’t owe anyone an explanation for any of this. Or why I may look fine, but feel awful. Do you know how many people have told me that they have friends who have Lupus and “are just fine”? I used to feel like that was a personal dig. Like, if other people have this disease and “are just fine,” I should be, too. But I started thinking that “just fine” is an assumption in the eye of the beholder. These people may look “just fine,” and it’s not to say that their disease could be in remission, however, it seems to me that the more likely story here is that people think they look fine, and, therefore, assume that they are.
For those who don’t know that I’m sick, I don’t just go blurting it out for fun. I don’t usually say anything unless it becomes necessary. But the truth is, pretend or not, lay it all on the line or keep it all inside, I’m not your everyday graduate student attempting to get a Ph.D. It’s not an easy thing for anyone; it’s certainly not going to be an easy thing for me.
Certainly, I hope that I can finish my program “on time,” which is just a euphemism for “before my funding runs out.” But the thing is, I don’t have the answers for when I am going to be “ill” or “not.” And with the unpredictability of Michigan weather, it means I’m kind of out of luck as far as “climate control” is concerned.
Sometimes I wonder, though, if our lives would be easier if we didn’t want so badly to be noticed. There are times when the ache to be normal is so deep, I would do almost anything for one day of not being ill. I often feel like I am caught between two worlds. On the good days, I feel like I don’t quite fit in to the world of the chronically ill, even though I know that for most of us, the severity of our diseases ebb and flow. On the bad days, I definitely don’t feel like I belong in the world of the healthy. I don’t feel understood at all. And it’s on these days that I realize that our need to be noticed and acknowledged is of the utmost importance. Our silence can have deadly consequences.
National Invisible Chronic Illness Awareness Week is worth celebrating because it brings awareness and much needed attention to issues that profoundly affect the lives of many people.
Leslie Rott is 23 years old. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in sociology at the U of M. She currently authors the blog Getting Closer To Myself (gettingclosertomyself.blogspot.com), which chronicles her journey with rheumatoid arthritis and systemic lupus.Read Full Post | Make a Comment ( 9 so far )
« Previous Entries