If you’re living with a chronic disease, I know you have insights and information that others need!
Share your story – I publish articles that describe how survivors cope with chronic illness, remission, and life in general.
I also feature books, products, organizations, and resources that help people cope with disease. Have you started a blog, written a book, created a product, or done something with your illness that you’re proud of? I’d be happy to include your links and products!
I invite you to share your story, what you learned, and what you would do differently.
Coping With Chronic Disease – Stories From Survivors
Here are my questions – feel free to answer them all, or just the ones that resonate with you.
You can answer in the comments section below, or email me your answers.
I don’t want to publish my email address here – to contact me, please leave a comment below with your email address (which will not be published or added to an email list). I will email you. Then, you can send me your answers.
Questions About Living Chronic Disease
- What is your name (real or not), age (optional), location (optional), and occupation?
- What disease have you been diagnosed with, and when?
- Are you in remission, or is it flared? How do you keep it from taking over your life?
- What do you know now that you wish you would’ve known when you were first diagnosed?
- What advice or tips would you give people diagnosed with the same disease – or any illness?
- Has your spirituality changed since being diagnosed?
- What advice would you give the friends and family members of people coping with chronic illness?
- Instead of “fighting disease”, I live in harmony with it (I have ulcerative colitis, and my husband and I can’t have children because of male infertility). Do you see your disease as something to fight, or something to live in harmony with? Why?
- What would surprise people to learn about your illness?
- Has your illness motivated you to start a blog, write a book, create a product, or done something different with your life? If so, tell us about it. Why did you start it, where can we see or get it, and who would it benefit?
I reserve the right to edit for brevity, and retain copyright of everything I publish here on Quips and Tips for Healing and Hope.
Here are some published stories:
- Psoriasis – How Alisha Copes With the Symptoms of Skin Disease
- Type 2 Diabetes – How Donna Copes as a Diabetic and Nurse
- Ulcerative Colitis – How Laurie Survives Inflammatory Bowel Disease
- Interstitial Cystitis – How Val Survives Chronic Bladder Inflammation
If you have any questions or thoughts, please comment below. I hope to hear from you soon!
Dear Dale,
Did you get my email? I sent you one a couple days after you commented here, but I forgot to come back here and tell you I emailed you!
Dear Laurie,
I have been diagnosed with 5 autoimmune disorders. I’m not surprised, since my mother was diagnosed with 3 (lupus, Sjogren’s syndrome, and RA) at the age of7 71.
The thing is, I’m only 54.
My question is this:
How do you write on the days when you have no energy to spare?
By the way, I don’t have lupus, but I have the other two as well as ulcerative colitis, fibromyalgia, and (I can’t remember the name) a bone condition that causes excess bone to grow at various sites on my body. I have thickened sinuses and overgrowth at my right humerus. I also have 2 bone spurs in my left shoulder and 2 along my spine at the cervical and lumbar areas.
I have other conditions–but you get the idea.
Thank you so much for your articles, and thank you in advance for your reply to this note.
Sincerely,
Ms. Dale L. Masters
Thanks Shawna! I’ve emailed you directly.
Laurie,
I have Crohn’s disease and would like to share my story. I’d like to email you directly.
Thank you,
Shawna
Hi JC and Randy,
I’ve emailed you both directly; I welcome your story!
Blessings,
Laurie
Laurie
I came across and your blog and plan to check it out thoroughly. I thought our story my inspire some people that are going through difficult times.
Hi Laurie, if I submit my story can I include a backlink or two to my website that helps people cope with alcoholics?
I am also interested in advertising on your site. I own and operate alcoholicsfriend.com
I hope to hear back from you.
JC
Justine,
I posted your article on living with chronic disease here:
Rheumatoid Arthritis – How 19 Year Old Justine Copes With Joint Pain
Thank you so much for sharing this part of your life with us. I’m sorry about your mom – she really was a survivor, wasn’t she? She managed cancer for 5 years, even though the doctor only gave her 5 weeks. That’s amazing! It sounds like she taught you well.
If anyone comments or asks a question about arthritis, I’ll email you.
Blessings,
Laurie
Justine, thank you for sharing how you’re coping with arthritis. I’ll post your story soon, and email you when it’s up.
Hi Arianna,
Thank you for sharing your story about KTS!
I posted it here:
Klippel Trenaunay Syndrome – How Arianna Copes With KTS Symptoms
I’ll email you if anyone comments or asks a question…
Blessings,
Laurie
My name is Justine. I am 19, live in New Zealand, and am currently studying at university. I’ve answered most of your questions, though it turned out in essay format rather than question and answer.
When I was eight I began suffering from stiffness in my knees and hips. I was diagnosed with juvenile idiopathic rheumatoid arthritis at the age of ten, after extensive tests, including x-rays, CT scans, blood tests and once, painfully, the extraction of fluid from beneath my knee-caps. Rheumatoid arthritis is a chronic inflammatory disorder that occurs when the body’s immune system attacks a part or parts of a body, usually joints. Sometimes when young people have rheumatoid arthritis they grow out of it, but in my case I have only outgrown the ‘juvenile’ part of the diagnosis. Idiopathic means that no-one knows what caused the arthritis.
Initially the arthritis was only diagnosed in my knees. For the first five years or so I experienced no pain from my joints, but a lot of swelling and stiffness. I found it difficult to bend down and tie my shoes, or sit on the ground, or get up from the ground. When I was fourteen or fifteen, a new round of tests showed that I also had arthritis in my hips, which I had suspected for a long time. Various treatments around that time gave me back an almost full range of movement in my joints, and got rid of the swelling. Three years ago my mother’s death and my emotional turmoil exacerbated my arthritis and I began to experience a lot more pain.
I have always had days when I am perfectly fine, with no pain and lots of energy. But I also have bad days, and there are things that can set off pain, and I often feel low on energy or difficulty getting up in mornings. For the most part, the good days outnumber the bad. I am always aware of my arthritis, but I do not have to make too many concessions to it.
The trick – or at least A trick – to living with a chronic illness is to figure out the limits that it places on you. For example, I can walk longer distances on earth or grass than on concrete, and I can cycle or swim, but I cannot run. Even standing for too long a time can set off pain. I do not have as much energy as I would like. Stress, anxiety and depression all exacerbate my arthritis, as do some foods.
Once you know these limits, you can learn how to work around them, and when and how you can push them. Determination – or outright stubbornness – helps here. It’s also important to know that your limits change – they are affected by medication, levels of stress, how much sleep you’ve had recently, the season – illnesses can be chronic but they are NEVER static.
The most important think for friends and family of someone with a chronic illness – I think – is for them to respect our limits. I don’t need people to be solicitous, but I need them to accept that I know my arthritis and my body, I know what I can and can’t do, and if I say I can’t do something – that my arthritis won’t let me – I know what I’m talking about. I haven’t had many problems in this regard – thankfully! – but when it has happened, it has been incredibly frustrating.
This also extends to doctors, though there as well I’ve been very lucky. I’ve tried a couple of different treatments for my arthritis, and my doctor has respected my opinions on them. I changed medications when one wasn’t working for me, and I vetoed another because the side-effects reminded me too much of chemotherapy, which had negative emotional connotations. ‘Negative emotional connotations’ is super secret code for ‘I almost had an emotional breakdown when the side-effects were described to me’. Once I had calmed down I decided that the benefits weren’t worth the side-effects, the stress, or the means of administration – a tri-weekly injection.
Rather than ‘fighting’ or ‘living in harmony’ with my arthritis I prefer to think of it as something to be managed. ‘Fighting’ is too active a term. If my struggle with arthritis is a war, it is a cold war, full of posturing, hostility, and gradual, grating attrition. I object to ‘living in harmony’ on the principle that harmony implies agreement, and I do not agree with the intentions of my arthritis.
So I manage it. ‘Management’ is my mother’s term. She managed terminal cancer for nearly five years after the doctors gave her five weeks. The principle is acknowledging that yes, I have a condition, and yes, it affects my life, but I can work around it. I respect the arthritis but I don’t have to like it, and I am not resigned to it. It doesn’t have to mean my life is any less fulfilling.
It’s like in the poem – “So it is, and so it will be, for so it has been, time out of mind . . . I know. But I do not approve. And I am not resigned.” The context is different, but the sentiment is perfect.
I think it would surprise many people to know I have arthritis. I don’t try to hide it, but it’s not something visible, except perhaps when I am feeling exceptionally creaky. Also, most people seem to view arthritis as a thing that affects old people – or they get rheumatoid and osteo arthritis mixed up. I’m not clear on all of the differences myself, but they do exist, and occasionally well-meaning people try to give me advice that might work wonderfully for osteo but is absolutely useless for rheumatoid.
Questions About Living Chronic Disease
1.What is your name (real or not), age (optional), location (optional), and occupation?
Name: Arianna Faro
Age: 21
Location: Boston, MA
Occupation: full-time college student at Merrimack College
2.What disease have you been diagnosed with, and when?
I was diagnosed with Klippel Trenaunay syndrome at birth.
3.Are you in remission, or is it flared? How do you keep it from taking over your life?
My Klippel Trenaunay has undoubtedly flared over the years. Growing up, I had a multitude of procedures and hospitalizations but was still able to live somewhat of a normal life. However, when I hit high school (literally the first week of my freshman year), I started getting severe cellulitis infections on a constant basis. For the next four years, I was shuffled in and out of the hospital along with having several operations. I also have dealt with blood clots the entirety of my life.
4.What do you know now that you wish you would’ve known when you were first diagnosed?
That it’s okay to have days where you are upset about your illness- you don’t have to hold everything in. If you do, it will boil over.
5.What advice or tips would you give people diagnosed with the same disease – or anyillness?
First off, I would say surround yourself with people who are supportive and will listen to you. Keeping yourself surrounded by positive people is essential; try not to associate yourself with negative ones as much as possible.
My particular illness impacts its patients in various ways, so it would be hard for me to give another KTS patient specific advice based upon the condition itself.
6.What advice would you give the friends and family members of people coping with chronic illness?
Somedays, the family member or friend may need some time to themselves to cope with all they have going on, so if they request that do not be offended by any means. If they decline an invitation to go out, don’t assume they are just bailing. Chronic illness is exhausting physically and mentally, not everyone realizes the toll it takes on one’s mind.
7.Instead of “fighting disease”, I live in harmony with it (I have ulcerative colitis, and my husband and I can’t have children because of male infertility). Do you see your disease as something to fight, or something to live in harmony with? Why?
Both. This particular disease is very uncommon and not known by most, so I feel it is important to speak up for it as much as I can to promote awareness and research for it. I along with my KTS colleagues have all significantly been impacted by this disease and it gets progressively worse as we age. I want to help ensure a better life for those who will be impacted by this condition in the future.
8.What would surprise people to learn about your illness?
For mine, probably that it does not just impact my leg, it extends up to my buttock and causes some other internal problems as well.
9.Has your illness motivated you to start a blog, write a book, create a product, or done something different with your life? If so, tell us about it. Why did you start it, where can we see or get it, and who would it benefit?
My illness has motivated me to do an array of things. About four years ago, I wrote an article for Children’s Hospital Boston’s Dream magazine and did a small documentary. The links can be found for those here:
http://www.youtube.com/watch?v=hhhRQ2te8-4
http://www.childrenshospital.org/dream/fall09/arianna_faro_fall09.html
This summer, I will be speaking at the national KTS conference in front of several doctors and patients. I was discovered through an old blog of mine in which no longer exists, but I have recently started a new one that will chronicle journeying through life with chronic illness- and the anxiety(OCD)/depression that
ensued following all of the medical chaos. It is a constant battle, but I have learned so much over the years and hope to help others like me someday.
You can find me on twitter @ ariannakts
my email is faroa@merrimack.edu
my current blog is
http://toujoursbellelove.blogspot.com/
toujoursbelle means “still beautiful” in French. I chose the name because in spite of the abnormal difficulties we experience, we are still all beautiful beings both inside and out.
Thanks and let me know if you have any other questions! : )
Arianna
Thanks Angie – it’s great to hear from you! Makes me think of my good old days, writing for Suite. Are you still a scribe over there?
I’ve emailed you directly with the questions about living with chronic disease. I look forward to hearing from you soon.
Take care,
Laurie
Hey, Laurie, drop me a line at my email or on Facebook. I haven’t been living with fibromyalgia for long (well, I didn’t know I was living with it anyway LOL) but I’d be glad to share what insights I might have.