30 Things About My Invisible Illness You May Not Know

Do you have an Invisible Illness? Welcome to the club!

Groucho Marx, comedian and actor, once said, “I don’t want to belong to any club that will accept people like me as a member.” The Invisible Illness “club” is like that for me. I was invited – against my will – to this club in the summer of 2006. And then, just like Mr. Marx, decided to withdraw my membership. I now live in near/full remission. [Search for “Simla’s Story” on this blog to find posts that go further into details about my life living with and healing from invisible illnesses.]

I’m posting the following “30 Things” as a contribution to highlight the start of National Chronic Invisible Illness Awareness Week 2009 TODAY, Sept 14, 2009. II Week 09 is hosting a 5-day F*R*E*E Virtual Conference with 20 fantastic speakers who are vibrant, well-versed in the art of living with invisible illness, and there to offer you and/or the ones you care about support and encouragement and entertaining, engaging information. Register and attend this conference by clicking here.

30 Things About My Invisible Illness You May Not Know
by Simla Somturk Wickless of www.enjoydelicioushealth.com

1. The illness I live with is:
Fibromyalgia, chronic fatigue syndrome, immunotoxicity, undifferentiated connective tissue disorder, multiple chemical sensitivity (all in remission – 95% of the time)

2. I was diagnosed with it in the year:
2007

3. But I had symptoms since:
2006, and maybe even years earlier on some of the conditions but wasn’t diagnosed properly

4. The biggest adjustment I’ve had to make is:
Change my career (from management consultant to health & nutrition consultant)

5. Most people assume:
That somehow I’m stronger than they are or that my medical conditions must not have been very serious because I was able to get to the point where I now live in full remission. Both are incorrect.

6. The hardest part about mornings are:
Waking up when my body is not ready to wake up – a feeling of utter and painful exhaustion.
Or if I ate gluten the day before: feeling deeply exhausted and having inflamed, painful joints and soft tissue as a result.

7. My favorite medical TV show is:
Grey’s Anatomy, because of the drama, not the medicine.

8. A gadget I couldn’t live without is:
My laptop.

9. The hardest part about nights are:
Used to be the all-over itching caused by my drug-induced liver inflammation and excruciating nerve pain in my legs. Nowadays, occasional nerve sensitivity in my legs, or if my adrenals are off, insomnia.

10. Each day I take __ pills & vitamins.
Down to about 10 from 45+. WOO HOOOO!

11. Regarding alternative treatments I:
Bet my life on them and I won.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I’m a very private person. This way I get to choose how and where I share information about me.

13. Regarding working and career:
You must love the work you do to be truly healthy. I LOVE my work now. It feeds my health and soul. And I wouldn’t have found it had my illnesses not found me.

14. People would be surprised to know:
That I am thankful to my conditions for the strength of self, renewed life purpose, and revised priorities they brought to me.

15. The hardest thing to accept about my new reality has been:
I don’t have all the freedoms I used to have, if I want to live in full remission, such as eating anything I want.

16. Something I never thought I could do with my illness that I did was:
Heal it to where, as long as I manage my triggers well by avoiding or mitigating them, I live pretty much in full remission.

17. The commercials about my illness:
Drive me nuts. Prescription medication should not be advertised on TV.

18. Something I really miss doing since I was diagnosed is:
When I couldn’t walk, it was walking.
When I couldn’t read, it was reading.
When I couldn’t think, it was thinking.
Now, living in remission, it’s the ability to eat whatever I want, as I have to be very mindful of certain foods triggering my symptoms. I’m planning on overcoming that too.

19. It was really hard to have to give up:
Cheese and coffee and wheat, as these are some of the foods that trigger my symptoms.
I’ve regained the ability to do almost everything else that matters to me.

20. A new hobby I have taken up since my diagnosis is:
Blogging! =)

21. If I could have one day of feeling normal again I would:
I now have those days back and I am grateful for every second.

22. My illness has taught me:
That doctors are fallible, that our medical system is very broken, and that it is not designed to deal effectively with chronic, systemic conditions.
That “alternative” medical approaches are my default choices.
That the body, mind, and spirit are all connected and will all heal given half a chance.
That we are healthy when our world is healthy, and vice versa.
That healing requires you to get to know your body and and its signals, to listen to your intuition, to decide to get your health back and then follow through no matter how hard it gets or how many naysayers there are.
That real, beautiful, delicious food is fantastic medicine.

23. Want to know a secret? One thing people say that gets under my skin is:
But you look great! (When I was really suffering. Now it’s ok. =)

24. But I love it when people:
Are patient. When I shuffled vs walked, when I couldn’t be social… my family and true friends came through and showed it in their kind patience.

25. My favorite motto, scripture, quote that gets me through tough times is:
“It’s ok to feel bad, but it’s not ok to feel bad about feeling bad.” (from my husband)

26. When someone is diagnosed I’d like to tell them:
You are not your illness.

27. Something that has surprised me about living with an illness is:
How it can be a blessing in disguise and a huge life lesson (or several hundred).

28. The nicest thing someone did for me when I wasn’t feeling well was:
When I was bed-bound and couldn’t walk for several months, my husband surprised me by carrying me out to the car he had rented (we don’t own a car) and driving me to the beach so we could roll down the windows and I could get some fresh air and sun on my face.

29. I’m involved with Invisible Illness Week because:
It’s very important to me that those living with an invisible illness know and see from others’ experiences that they CAN live well and even heal fully from a chronic invisible illness.

30. The fact that you read this list makes me feel:
Warm and fuzzy, and happy that you took the time to understand a little better. Thank you.

Hear ye! Hear ye! F*R*E*E 5-Day Virtual Conference: Invisible Illness Awareness Week 2009

National Chronic Invisible Illness Awareness Week 2009

F*R*E*E 5-Day Virtual Conference
September 14-18, 2009

Do you live with an invisible illness or have it in the family? Cancer, Diabetes, Fibromyalgia, Lyme Disease, Lupus, Irritable Bowel Syndrome, Depression… they’re all invisible… they’re all very real.

Join one or join all 20 free seminars, for F*R*E*E! Get inspired and get tons of tips on living with an invisible illness, or join with a family member / friend to show support.

Read more and join the Virtual Conference from here.

Interview with Lisa Copen, Founder of National Invisible Chronic Illness Awareness Week

Lisa Copen joins us today as the founder of National
Invisible Chronic Illness Awareness Week. This year it will take place over September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you. Read on!

Lisa Copen

Thanks so much for joining us today, Lisa, here at Delicious Health’s blog!

LC: Thank you for the honor of being here. I read a lot of blogs, but recently
I’ve visited more than ever before and I’m amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.

Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

LC: It is. A lot of times we just call it Invisible Illness Week. Our mission
is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, communities, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national
event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Explain to our readers what a virtual conference is.

LC: A wonderful opportunity to “attend a conference” without every
having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference–which is completely free–September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.

That sounds amazing. So, do you have last year’s seminars available?

LC: They are available. Before 2008 we used a chat room for seminars so we
had written transcripts, but now one can hear 2008’s workshops directly from a computer, at tunes, or on a CD.

I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting
that long, etc. it’s just not possible, so this is an ideal solution.

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: For a few reasons. I began Fest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week. I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all.

I also saw lots of family members, caregivers, doctors, churches, etc. who
wanted to reach out to people with illness, but they said all the wrong things.
Eventually they distanced themselves from their loved ones because they just didnt understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy
people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.

Having lived through chronic, excruciating pain and having being told through most of it that I “looked great,” I can relate. It was frustrating, isolating, and disheartening, to say the least.

LC: It is, isn’t it? Even those of us who cope rather well with our illness
on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, So are you all better now? People don’t always comprehend the difference between being sick and being chronically ill.

 

So this is what made you decide to start Invisible Illness Week? To start some communication about these different issues and emotions?

LC: Yes, I wanted to bring people together to encourage one another. I saw
people burting with joy when they had every reason not to and I knew they could encourage others.

It really doesn’t matter what illness we have, where we live, what age we are,
how long ago we were diagnosed, etc. The fact that most of our illnesses are
invisible and not seen by people gives us a lot more in common that most of
the physical symptoms of our specific illnesses ever could.

What illness do you live with, Lisa?

LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed
in 1993 at the age of 24. A few years after my diagnoses I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I’ve never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I’ve been very blessed, but I’m also going through the emotions of my illness becoming more visible. My illness isn’t just painful every day now, but it’s hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I’ve been in a new season this last year and have many surgeries in the near future.

I heard that you type with just a few fingers.

LC: Yes, it’s true. I use just three fingers and my two thumbs to type. One
adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.

How can people get involved with Invisible Illness Week and find out more information?

LC: Thank you for asking because just by helping us spread the word, for example, sharing about this blog post or by linking to it or posting it on Facebook, is the perfect ways to help our grassroots cause. I probably don’t have to tell you that we don’t have a marketing budget! When people introduce their friends or family to her virtual conference or retweet out our twitters or articles, they are making a significant difference. We also have some fun items to help spread the word like buttons, and tote bags, silicon bracelets that say “Invisible Illness, Visible Hope,” awareness pins, and of course bumper stickers.

Our theme this year is “A Little Help Gives a Lot of Hope.”

We are also accepting blogs from people to be featured on our site as a guest
blogger. And we have a place to sign up to commit to blog on the topic of invisible illness on one’s own blog. You can join our cause on Facebook and share it with others, tell people about our video, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it’s listed in Chase’s Annual Events, journalists can tie in the personal story with the annual event.

How has blogging and twittering and other forms of social media made a difference? Has it helped in how you’ve been able to let people know about Invisible Illness Week?

LC: Absolutely. Exponentially! For example we’ve done a series of tweets on
20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

We have over 1600 people who have joined our cause on Facebook. And we have some amazing prizes we are giving away to people involved in these different outreach areas.

There are so many people who feel really alone, as if no one in the world can possibly understand how much they are suffering. What would you tell these people?

LC: If I could I would just give them a long hug and sit there beside them
to listen first. Listening is one of the hardest things to do! I struggle with
it myself! But I know that is what people need.

Secondly, I would also validate that they are right–no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can’t drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness
Twitters to connect people who Twitter about illness or health issues.

You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?

LC: I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for “Just Offering You” and one can fill out what they are able to offer (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

That’s a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like a gift certificate. Sometimes asking for help is really hard to do.

LC: Yes, that’s the idea. The cards are a perfect addition for a women’s ministry, a support group, or really anyone who wants a way to say, “I’d like to help. Here is what I am able to offer to do.”

What are some suggestions you have for approaching an invisible illness with positivity versus hopelessness?
 
It would take me a book to answer that (smile) but here are some of my best tips:
 
Learn the balance between being a good advocate for your health/illness and well-informed and digging too deep into the information on the internet and symptoms. You need to be well-educated, but not obsessed about your illness and all the things that “will” happen to you. You may never experience some of the symptoms or the severity and there is not “normal” for any particular illness. Each individual is different.
 
Have reasonable expectations of others and be honest with yourself about your communication skills. People will say the wrong thing or not react to your symptoms or comments the way you wish they would. Truthfully, do you even know what you want or need?  Whether you need to improve communication with your spouse, kids, parents or friends, learn to do it with grace and not get too emotional about it all. Learning to say, “I need to find a place to sit down” to “I am just going to stay and hour” is part of a lifelong learning process, but the sooner you learn it the easier your life will be.
 
Find a friend who understands some of what you are going through. Whether it is a loved one, someone from a support group, or an online friend, it really only takes one person who speaks the same language to help add perspective to your situation.

Search your soul for what is going to get you through those darkest moments when a friend, medication, or a cup of tea comes up short. For me, that is my faith in God and the ability to know there is a purpose in it all. Knowing I am doing my best at living health with an illness, yet my body still turns on me, makes me feel out of control. It’s these times I most heavily rely on knowing God is in control and I’m not just spinning in a universe without meaning.

Thank you again so much for joining us today, Lisa. And thank you for starting National Invisible Chronic Illness Awareness Week. I know that you have your own health struggles and that you are also a wife and mother, so I know it can’t be easy to do it all.

LC: Honestly, it’s not, but it has always kept me going too and I couldn’t
do it without my husband’s support. Thank you for hosting me at your blog today! I hope all of your readers will visit us at National
Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We’re going to have a great time!

From Invisible to Invincible ™ Part I – a.k.a Healing from Fibromyalgia and Much More

I’ve been procrastinating again. I finished a book, started another one, woke up at 5am because I had half a glass of red wine last night for the first time in ages, lay awake in bed for two hours, worked out for 1.5 hours morning, chatted with a neighbor, chatted with another neighbor, made tea, made breakfast, watched a cat catch and eat a bird, doodled on some other social networking site. Now I’m writing this paragraph. Everything to keep myself from starting to write about what I really need to write about: my how-I-got-really-really-sick-and-how-I-got-well-again story.

I know part of why I don’t want to do this: I don’t want to relive it, I don’t want to focus on the negative (I never do!), as I’ll have to do when I write. But there’s something else nagging at me and I haven’t figured that one out yet.

But it’s time. And as much as I’m dragging my fingers right now, I know I’ll gain steam when I get started. So here I go!

***

3 years ago I felt like my life was over. Almost everything I had worked so hard for – my 10-year career including  a prestigious master’s degree, my fit body, my intellect – went up in proverbial smoke. I couldn’t walk, I couldn’t work, I couldn’t think, remember things, or feel anything but pain all over. On the outside, I looked fine most of the time. But my body, my head, and my insides felt like they were crumbling.

Literally overnight, years of chronic stress and running on empty caught up with me, finding and seeping through the hairline cracks in my body until the built-up pressure broke down all the defenses. Up until that moment, I was a highly accomplished Type A, perfectionist, busy professional who was totally in control of her world, high heels and all.

But now, I felt invisible, like a non-entity:  I was not able to be productive and feel good about myself, I was scolded on the bus by older women because I sat up front in the ‘reserved for disabled’ seats because I couldn’t stand (hey – I looked fine!), I was a nuisance to drivers because I crossed the road so very slowly (I could barely walk because of my severe neuropathy), I barely had enough energy to brush my teeth on most days, and even if I had the energy to, I had nothing to talk about and couldn’t relate to other people because I was consumed by my pain and medical agony.

Something shifted when I hit rock bottom:  I wasn’t going to have it anymore. I wasn’t going to play by others’ rules that said “You have to be on this medicine,” “You will be pain for the rest of your life,” “You have to have this surgery,” or even “There’s nothing wrong with you.” I started playing by my own rules. And that’s when I started becoming Invincible. Even if I had to live in pain, I was going to do it on my own terms. I was going to rebuild my life.

Now I feel great, having been on the mend since about November 2008 after about two years of really hard work using my own body, mind, and spirit trio as guinea pigs, when all of a sudden ‘one step forward, two steps back’ started becoming ‘one step forward – oh, wait, look! another step forward! and another! wooo hoooooooooo!’

This is now the best I’ve ever felt, really:  high energy, high spirits, my body is strong, my skin is glowing, no symptoms (as long as I mind my triggers – more on that later), no weird stuff, no colds / flus / headaches / asthma / etc (see below), and I am at peace with my life and my world. I love my life, my  work / passion, my body, and everything this experience has taught me.

My standing diagnoses as of 3 years ago are (were?):

• Fibromyalgia
• Chronic Fatigue
• Undifferentiated Connective Tissue Disorder
• Multiple Chemical Sensitivity
• Immunotoxicity
• Post-Traumatic Stress Disorder
  (with the Trauma being the overnight dissolution of my health at the age of 32)

These are what I’ll be writing about most of the time. But my past health history includes the following, which I may deign upon now and then as some of these may apply at some point:

• Chronic asthma (no more asthma now)
• IBS
• Many food allergies (down to a very few now)
• Chronic bronchitis (no more)
• Pneumonia (no more – no colds anymore either)
• Chronic tension headaches (very, very rare – maybe 2 x year vs 3 x month)
• A gallbladder full of stones due to heavy antibiotic therapy (gone – avoided surgery – got rid of them naturally in 2 months with the help of my Naturopathic Doctor)
• Medication-induced hepatitis and pancreatitis (liver still temperamental – hence the wine’s effect on me last night – but otherwise healed)
• Unexplained fevers (with no other symptoms – thankfully no more)
• A probable diagnosis of viral meningitis (yikes!)
• An atrophied left ankle due to faulty cortisone therapy (my ankle is fully healed now)

Eeek, right? No wonder I’m an “expert patient” and can emphathize with my clients – most likely, if you’re struggling with a health issue, I’ve been there too!

The good news is that the story has a happy ending, per se. 

Okey doke. This is all I feel up to writing for today.

To be continued – stay tuned for Part II and beyond! I’ll keep digging deeper and sharing insights, tips, and more details about my healing as I go.

As always, I welcome your comments and questions. I have a little bit of a backlog to get back to earlier posts, so please bear with me if you’ve reached out to me already…

Have a delicious day!

Making Good on My Mission Statement and the Path to Invisible Illness Awareness Week 2009

When I first created this blog, I stated that part of my mission was to share my own story about healing from multiple autoimmune and other health conditions. Recently, I skimmed through my own blog and realized I hadn’t delivered on that promise. I’ve also received several requests from my followers to please get on it.

This also made me wonder why I haven’t started sharing that part of my story yet. Yeah, yeah, I’ve been busy building my practice and the last 18 months have been truly hectic, blah blah blah. The real reasons?

One reason is… I don’t know where to start. Another reason is that my perfectionist tendency to want to do it just so gets in the way of starting. And given that it’s a very complicated story (as life tends to be), I am not sure how I want to organize it in bits and bytes, as I certainly can’t write it in one sitting. (I hear my coach whispering in my ear: “Just take imperfect action!” I’m working on it, Sandy, oh believe me, I’m working on it.)

And, of course, probably the most important reason is that in writing my story, I will need to relive it. Frankly, I don’t want to. I’ve moved on, but I know my story isn’t really just about me. It’s about something much bigger; something that can help many more autoimmune sufferers (I hate that word), perhaps you, live better, live fuller, and not define themselves and their lives by the restrictions, frustrations, hopelessness, and silent agonies dictated by these types of  illness. I say autoimmune, but I’ve survived several non-autoimmune illnesses that were invisible as well, so those too shall be heralded, dissected, and presented for your benefit. Imperfectly.

I recently stumbled across an initiative called the Invisible (Chronic) Illness Awareness Week that will take place from September 14-20, 2009. I immediately jumped on as a volunteer blogger to help bring much needed attention to invisible illnesses such as autoimmune conditions. I don’t believe in coincidences. The mere fact that I had already named my upcoming Fall autoimmune program launch “From Invisible to Invincible ^TM: How to Take Back Control of Your Health & Live Well With An Autoimmune Condition” seemed like no mere coincidence. [More info coming soon! Email me at hello(at)enjoydelicioushealth.com for more info if you can’t wait.]

So here I go! My intention is to slowly but surely begin sharing more of my story this month, as August is a more contemplative month for me – being summer and getting slow and all. (Read more here on the importance of Slowing Down.)

I look forward to hearing from you. Please join me, post here, and share your story so that we can all learn from each other, promote more awareness about those that suffer in silence, promote compassion for dis-eases that are invisible and yet very real, and give each other support in a positive, upbeat, fun way. Deal?