Why You Should Believe Chronic Fatigue Syndrome is Real

The age 21 was the peak of my life.  Well, at least the peak of my energetic life.  I was in the top of my class at a highly competitive design program I’d been preparing to get into since I began high school.  I lived independently, had an active social life, taught a college course, and ran marathons.  I even moved to the slums of Argentina for a year to serve the poor.

When I think of the ‘me’ I was at the beginning of that year, I hardly recognize her.  I think of the stories like they were of some other person who I hardly knew; my life is so different now I can hardly comprehend a comparison.  

The ‘me’ at the end of the age of 21 is more understandable.  Hardly able to function, too sick to fulfill commitments, friendships turned awkward.  Yeah, that’s sounding more like the ‘me’ I know now.

After running the Moab,UT 1/2 marathon 2003

After running the Moab, Utah 1/2 marathon 2003

Half way through my planned trip to Argentina I began to feel sick.  Within weeks I was too sick to fulfill my service obligations and within months I was so weak I could hardly function.  I visited Argentine doctors and when they couldn’t figure out what was going on, I visited a British hospital in a nearby city.  When they failed to help me I was flown back to the States where I was treated in one of the top hospitals in the world.  It didn’t matter.  They still found nothing.

At this point I’d been sick for almost 6 months.  I’d lost all ability to live my life and all the doctors could tell me was that my lymph nodes where swollen and my autonomic nervous system wasn’t working properly.  But they didn’t know why or what to do about it.  They told me to go home and wait- that I’d probably get better on my own.

Well, that was in 2005 and I’ve been sick every day since.  Sometimes I’m tempted to send those doctors a postcard just to let them know I’m still waiting :).

Sick in Buenos Aires 2005

Sick in Buenos Aires 2005

Because the doctors were unable to find the cause of my fatigue I’ve been diagnosed with CFS (Chronic Fatigue Syndrome).  My autonomic problems have been diagnosed as POTS (postural orthostatic tachycardia syndrome) a condition commonly paired with CFS.  I am legally disabled, unable to hold a job and, quite frankly, almost always too sick to even mop the floor.

So, why am I telling you all of this?  Mostly I just want you to believe me.

It might be hard for you to comprehend, but the majority of the conversations I have end with the other person hearing the words ‘Chronic Fatigue Syndrome’ and rolling their eyes as they make an excuse to leave (that includes doctors).  Apparently, anyone claiming to have CFS must be crazy.  I am disrespected and disregarded on a daily basis.  I am openly judged so often it hardly phases me any more.  When I need serious help, I find that it comes easier and with more respect if I flat out lie about my health problems than if I tell the truth.  Our world is just set up better to accept my lies than it is to believe my reality.

And you know what, that’s pretty stupid.

I graduated college as a student with disabilities.  It took me 8 semesters to finish what would have taken 2 if I had been healthy.  I will forever applaud disabled students; learning is HARD when you are constantly fighting your own body.

I graduated college registered as a ‘student with disabilities’. It took me 8 semesters to finish what would have taken 2 if I had been healthy. I will forever applaud disabled students; learning is HARD when you are constantly fighting your own body.

Chronic Fatigue patients need good doctors to help alleviate symptoms.  They need scientists to search for better meds and physical therapists who can help them find their life again.  It’s true, we need a lot.  But before anything else, we need you to believe us.  If enough people could just believe that this illness is real, it could finally be taken seriously.  If people believed, everything else would follow.  It is something so small- it costs you nothing.  But to me, and the hundreds of thousands suffering from debilitating fatigue, your belief could be life changing.

Today is Chronic Fatigue Awareness day and all I ask is one small thing; Let’s start believing.

Working from home in my hospital bed.  I'm too sick to hold a traditional part time job.

Working from home in my hospital bed. I’m too sick to hold a traditional part time job.

 

38 Responses to “Why You Should Believe Chronic Fatigue Syndrome is Real”

  1. Really interesting post, Jessica. Thanks for sharing. I especially like the image of you graduating, brings back some college memories!

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  2. Jess, I just purchased one of your darling dino patterns at the HMQS on Friday. Although I haven’t started making one yet, I was already regretting not buying the Dragon and the Unicorn. 🙂 So I went to your site to check them out-which then lead me to your blog.

    I know we don’t know each other, but from what I already know about you, I am so impressed. I’m no expert in chronic illnesses, but I know they’re real. I have people I love in my life that suffer from them. I’m not sure how comparable CFS is to Fibromyalgia, which is what my grandma and my coworker have, but I know it’s a beast. They live in constant pain and exhaustion. How they live life each day, doing what life requires is unimaginable. I don’t know how they do it, nor do I know how they do it and are still happy people.

    I’m really excited to make your dinosaurs. They are darling! I’m quite impressed that you are able to be so happy, creative, talented and perseverant while dealing with CFS. Thanks for making such cute patterns and for being at the quilt show, so I could buy them.

    I guess what I really wanted to say in this comment, is that I know that CFS is real, and I admire you for doing what you do while living with CFS. I can’t wait to see what other cute patterns are yet to come!

    Carly

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    • Carly, thank you so much for your comment! Fibro and CFS are often paired together and so I’ve met a lot of fibro patients. They are some of the strongest people I know. I’m sure your Grandma and friend fit into that category!

      And I’m so glad you like my patterns! My little pattern business is the one way I’ve been able to use my design education without getting overly ill. It’s been so exciting to finally feel like every day has a purpose, even if I’m stuck in bed (I work on the pattern write ups when I’m too sick to sit at my sewing machine) . You ‘re support means a lot to me. Thank you!

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  3. Elizabeth Lee May 12, 2013 at 5:17 pm Reply

    Hey Jessica,
    I know I haven’t seen or talked to you for like 10 years but I just wanted to let you know I have thought of you in that time. I struggled with my own chronic illness for about five years and it was the most difficult trial of my life. Like you, my illness completely changed who I was and I had to redefine myself within the illness (SO hard). I can definitely appreciate the part about not being believed though- “How can there be anything wrong with you if we can’t find any evidence of it?” I”m happy you are finding ways to make life more fulfilling and i pray that you continue to have the strength to move forward. I know it’s not easy even though you seem to keep a smile on your face!
    your cousin Elizabeth

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  4. I came across your blog while looking for a printable card to write a note to a coworker on the anniversary of his infant son’s death. It is a beautiful printable and you are very talented!
    I’m so sorry that you struggle with this Chronic illness. I work in Pharmaceuticals and know that we are working on many diverse treatments for ailments of all kinds, I hope that an answer can be found for you. In the meantime, keep your head up and keep designing, it’s truly your calling 🙂

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  5. Jessica – As a fellow CFS sufferer I admire how you’ve made lemonade from life’s lemons. I recently saw your infographic with the beans in a glass to show how post exertional fatigue works. It’s perfect. I belong to P.A.N.D.O.R.A. and we are working on participating in in-services for health care personnel and in health related activities. Would you be willing to give permission for us to use this infographic for handouts and posters? We are non-for-profit and will not charge anything for the handouts.

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    • Carol, I’d love for you to use the graphic! Feel free to copy/paste it right off of this site. If you need a better quality image for what you’re doing let me know and I’ll get one to you.

      Thanks for asking!

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  6. I have fibro and chronic fatigue syndrome also, but over the years I’ve added Ehlers Dallas Syndrome, clotting issues, thyroid that’s low and the latest is PBC. Most of these illnesses come with fatigue. I guess my point is, keep going to doctors and having tests run so that nothing is missed.

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    • That is a fantastic point. Not only can they find more, but medical science is advancing to rapidly now that I’m always afraid if I stop going I’ll miss out on the latest information. I know when I first got diagnosed with POTS, hardly any of my doctors had even heard of it. Now (about 9 years later) most of the doctors I go to know all about it and have even read up on recent studies.

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  7. Jessica,
    Thank you for giving me hope. My 14 year old daughter has just been diagnosed with CFS. I am trying to imagine a life for her without being a cheerleader, working 50+ hours/week in the summer as a lifeguard and teaching little kids to swim, on swim team, and involved in ever facet of school. For the past month, she has had to fight to get out of bed, muscle aches beyond regular soreness and migraines with dizziness and vision impairment. I read articles and just try to imagine how she will finish high school and be able to go to college. She too, wants to go to a prestigious design school and as an interior designer myself, I know it is tough!

    I applaud you that you stuck with school and completed it despite the challenges that you faced. I can not imagine completing my degree with what my daughter is facing.

    You are an inspirational lady!
    Much Love & wishes for good heath (at least good sleep!)

    Sonia

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    • Sonia- I am so sorry to hear about your daughter! Chronic illness is hard no matter what, but to get sick at 14… I feel like the universe should have a rule that no one should ever have to go through that so young! I was so surprised to see my hard core, crazy strict design professors bend over backwards to help me get an education without compromising my health. I had a councilor who took me under wing, made sure I got registered as a student with disabilities so I could get comfortable chairs and approved class breaks. She got me set up with a handicapped parking permit so I could drive right up to my building. The list goes on and on- I found so much support in a university setting and it helped me find a life even with this crazy illness. I do hope your daughter’s experience will be similar. Good luck to you both and stay in touch! I’d love to hear how you’re both doing.

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  8. thankyou! it is so hard feeling so ill and not getting any recognition of actually having a problem. I cannot tell you how many times people have told me it is ‘in my head’ or i am ‘just tired’. even after my diagnosis people didn’t take it seriously. This really helped me out 🙂

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    • alicer- I believe you!!! Sorry to hear you’ve been ill- hope you find at least a few people to be a good support system through it all.

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  9. Claire Hamilton March 12, 2015 at 5:37 pm Reply

    Hi Jessica I loved your right up about cfs it ring true in my life I have fibromyalgia chronic fatigue restless leg syndrome etc etc xx I also feel no body believes or understands the tiredness the pain the inabilities to function I have 4 children a husband who supports me xx and a family who try hard x I miss the small things like going to the park picking my baby boy up x being awake a whole day xx love your patterns by the way very cute I took up crocheting to feel like I could do one thing in my life at least x I signed up to be a pattern tester for you look forward to the challenge x gentle hugs xx

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    • Claire, I’m so glad you liked the post! 4 kids must be quite a bit while you’re feeling sick every day (it’s a lot even for healthy folk!) but I’m so glad to hear they are supportive. It must be wonderful to be surrounded by love every day 🙂 I’m glad to hear you’ve signed up as a pattern testers- I’m excited to work with you! Be sure to let me know if you end up getting too sick to finish testing- I will certainly understand. 🙂

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  10. Hi, there!

    I love your patterns and just found you on Pinterest. But I’ve just read your story and I HAVE to ask: did you get a bunch of immunizations right before you left for your mission? You have a similar story to my sister who has just discovered (after years of searching) that she has a vaccine injury from shots to go to Peru. She’s become somewhat of an expert (and well-researched advocate and activist) on the subject. She has many of your symptoms and has found some successful treatments. If you’d like to get in touch, just reply. I’d be happy to connect the two of you.

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    • Rachel, I’m so glad to hear you like the patterns! I did get a couple immunizations before my mission. I’m always up for new information and would love to hear from you sister!

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  11. It is sad that society determines what is an ‘acceptable’ illness and what is not. Depression has also gotten a ‘bad rap’. I love your positive attitude and continuing to do something positive and useful when you are able. I also LOVE, LOVE, LOVE your instructions for How to Bind a Quilt. Are you planning any more of what I call HandOuts? They are so helpful to students in my quilting classes. Keep pursuing new information. In this day when medical professionals can replace hearts, I would think that they could find an answer to CFS as well. So proud of your attitude, not sure if I could be as positive and happy. Thanks again for your great patterns. Diane in Canandaigua, NY (It is April 23 and it is SNOWING and 30 degrees. There is snow on my daffodils. ;(

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    • Thanks so much! I agree- is pretty crazy that there are any illnesses that aren’t socially accepted. It certainly doesn’t make them less real! I don’t have any more handouts in process right now, but I’m sure more will come soon! I’m glad you like them!

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  12. Oh dear Jess, I believe you! I have fibromyalgia and fatigue that affects me every day. I believe that I too have chronic fatigue syndrome as well as fibromyalgia. If you were treated in the best hospital in the world in the USA in 2005 they should have been able to discover that you had chronic fatigue syndrome!! Why did they not find it? That seems strange. I have lived with fibro for many years. I know what you are talking about. I am so sorry that this has struck you so profoundly at such a young age. You can talk to me anytime as I believe you without needing to be convinced.
    Gentle hugs
    Rachel

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  13. Thanks for sharing. I believe you. I too have CFS and Fibromyalgia, along with all of it’s wonderfulness. I don’t look sick. I have even gained weight since being diagnosed 10 years ago. I have people tell me all the time “it must be nice not to have to work” I would love to work and be out in the world with people. I hate not being able to do regular stuff.
    I sew and quilt. I find ways to sew and do the things I want to from my recliner.

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  14. In this year and with all the research including MRI that show Chronic Fatigue Syndrome to be a real illness, I always think that anyone who does not believe in this disease is truly ignorant! I understand exactly what your saying though, I have definitely dealt with this same experience with doctors, friends, neighbors, and even unfortunately family members. I have had CFS for over 10 years and for many years I called it Fibromyalgia just because that is accepted easier for others, however now I am committed to standing my ground and standing up for myself and others suffering with CFS. I no longer try to hide my illness and if people don’t believe or don’t understand that is their own problem. I often think if they felt the way I feel for just 1 day they could not even handle it. I think you are a very strong young woman to share your story and even pictures. God bless you, and I hope you recover, I hope we all recover from this terrible disease.

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  15. Dear Jessica, thanks for your article. I agree. It’s hard being ill with a so-called “invisible illness”. I have been ill with CFS for 12 years. I have had some excellent improvements in the past 2 years following GAPS Nutritional Protocol. More improvements in these past 2 years, than in the 10 years prior, so that has been great and I feel very grateful for that. I hope you are doing well, as well as you can. Kindest Regards, Sarah.

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  16. Jessica thank you, I have found your writing really useful.
    I have a darling daughter with cfs who is sitting a uni exam today! As you would know this is not a simple task!
    You are an inspiration, best wishes brave one.

    Jenny

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  17. hi, I will keep you in my prayers. I don’t know anything about your illness but I am glad I found you. I do quilting now and I am working to make a family quilt wthe familoinging to try the binding on my quilt,ok thanks and god bless you always. photos. I just want to thank you for how to bind a quilt. I am gi

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  18. Linda Cerrito January 3, 2016 at 4:32 pm Reply

    Jessica…i came upon your site today and am so impressed by your determination to continue with life on your terms and not to give in or up. i’ve had fibro for 35 years but can say I’ve been luckier than most that it hasn’t stopped me much. However, about 5 years ago, after having had symptoms for many years, I was finally diagnosed with myasthenia gravis. It was only when the muscle weakness affected my eye did the doctors finally listen to my complaints of weakness, fatigue, so tired at dinner i couldn’t chew my food, etc. It is also an invisible illness, something people know nothing about and is so difficult to understand. There are days my muscles really don’t want to co operate to do anything, they’re so tired. But we do keep going, don’t we? I hate to use the excuse I have ….. because it’s just not worth it trying to explain anything

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    • Linda, thanks so much! I know just what you mean- sometimes trying to explain things is worse than just living with people who misunderstand what’s going on. I’m sorry you’re so tired. Keep going!

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  19. I believe you and I will pray for you. My daughter was diagnosed with Fibro 3 years ago after many suffering years. She still works full time and has 2 boys ages 13 and 10. I homeschool the boys every day and take them for the day occasionally just so she can rest (she sleeps for an entire day and still feels tired). I have some idea how difficult it must be to be bedridden when prior to your illness you were so energetic. It is a darn shame when anyone so young is striken with any illness. My 13 year old grandson has Asperger’s and the 10 year old has ADHD. They are a challenge some days-I must say!! I will come back to your site on a day when I have some money to spend. I make LOTS of stuffies for my 8 grandsons. and you have some cuties I am eager to try.

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  20. Linda, I just read about you, and I wish I could say that people will get more understanding, but I don’t think they will. I also know what your kind of “tired” is. I have multiple sclerosis and extreme fatigue and weakness are a big part of it too. What I hear a lot from laypeople is “But you don’t look sick” and “You’re just using that to get out of work” or “If you’d do more exercise you’d get better” or worst of all “You’re just lazy!” I best heard our kind of tiredness described as “If this kind of person tells you they are too tired to do something, it means that if the house were on fire they couldn’t put one foot in front of the other to get out.” Some of them think that if they goad us enough it will get us up and going, therefore they are helping us. Some of them do it because either they resent having to help us or are overwhelmed by having to help us, but they don’t understand how bad we feel that we have to have help and how belittling it is to us to have to ask for it. I have the MS Society. They help a little. Is there a CFS society for you? If there is they could help. Also,I have an electric cart that helps for long distances. I am now 71 years old but still have a Type A mind in a Type B body, and as George Burns used to say “my mind makes appointments my body can’t keep”. But we may be weak on the outside but we’re strong on the inside so we adapt as we have to so we can do what we want to if not always what we wish we could. For what it’s worth, I believe you. Betty

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  21. http://edis.ifas.ufl.edu/in722
    http://www.mayoclinic.org/diseases-conditions/chagas-disease/basics/definition/con-20030854

    Check out this link and read about Chagus Disease. I stumbled upon your website and your post about visiting Argentina and getting sick raised red flags – I think you might have contracted Chagus Disease

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  22. i too have an auto immune disorder, i took an antibiotic for 6 years,it turned my dreary life around for the positive… several top drs laughed at my decision to do so… read the ROADBACK FOUNDATION , web page.. i pray for your courage, i had nothing to lose and no hope for treatment…. it worked….. hope you would have the same results…. blessings to you..

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  23. I do understand what you are going through. I am in that place. No people don’t ‘get’ it. I also fight depression. I can be doing great and it is like someone throws a switch. I can hardly walk. It takes everything just to get to bed. I have non Hodgkin lymphoma, stage 4. In remission.
    Hope you can find some help. You are young, I am not. I can’t watch St Jude’s info on tv.

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