Chronic Illness

Community Roundup: What Advice Would You Give The Recently Diagnosed?

If you had just one piece of advice to give at the beginning of a friend's journey post-diagnosis, what would it be?

Send Me More Stories About Chronic Illness

Thank you! We will notify you when there are new stories about this topic.

Most conversations about health revolve around getting better as quickly as possible. We push forward through illness with the expectation of improvement. Yet for those with chronic conditions, there’s a different calculus required. The question becomes how to live well with an illness when there’s no recovery date in sight.

That’s why, for this week’s Community Round-Up, we asked Folks’ followers: What advice would you give someone recently diagnosed with a chronic condition?

Jed Finley:

Jed Finley

Do as much research as possible. You need to be the expert of your condition. Doctors are educated but unless they are a specialist in your condition, they are also working with patients with several other conditions. You theoretically need to get your Masters and your Doctorate in your condition. That said, don’t hyper focus on every symptom. For me, Ankylosing Spondylitis has an unending list of possible symptoms. Many of them, I don’t have. Be aware of them, but don’t obsess.

Be aware of your body. Keep a symptoms diary to keep track of how you feel. When I go into the doctor I want to be able to tell her exactly how I’ve felt and what I did that might have lead to that pain of lack there of. Make the most of your time. Most doctors only spend five minutes actually looking at you. Make sure all your concerns are heard, and if you aren’t satisfied, don’t let the doctor leave. He or she is working for you! Simply put, be an active patient!

Jed Finley is a Special Education teacher in his mid 30’s who was diagnosed with Ankylosing Spondylitis at 12 and created the Facebook-based support group Living With Ankylosing Spondylitis. He can be found on Twitter at @JediMaster941. 

Claudia Merandi:

Claudia Merandi

I was six years old when I experienced my first flare with Crohn’s Disease. As I would get older, the flares became intense. Sometimes the pain was so severe that it would take my breath away, my mouth would get dry, and I would rock back and forth until the pain would pass. This became the norm in my life. I was accustomed to pain. When my second daughter was born, my world stopped at home but it continued in a hospital bed for the next ten years. I no longer identified as being a successful court reporter, mother, and a  daughter, I only identified as being a person with a chronic illness. I remember closing off the world and living only as a sick person.

Eventually, I would rewire my brain and I became a chronically ill person living in a healthy person’s world and I learned to acclimate.  I started delivering Meals on Wheels, and then I, eventually, began to advocate for elderly. It’s imperative, as a person living with a chronic illness, to remember that their illness is a part of life but there’s many other pieces. My illness does not define the person that I am today. My illness aided in the person that I am today. Sadly, there’s no manual that comes with being a chronically ill person because it’s a lifetime challenge. It’s the club that nobody is knocking on the door to get into. But once you’re in the club, you need to learn the rules of the club. On the days that you’re sick, rest. On the days that you’re healthy, you need to embrace those days. Remember your passion, remember what makes you smile.

Claudia Merandi is the author of Chron’s: The Other “C” Word. She is also a patient advocate/activist, author, and Crohn’s Warrior. She can be found on Twitter at @CMerandi.

Forester McClatchey:

Forrester McClatchey is a regular Folks contributor on diabetes. Our favorite luddite, rejecting social media of all kinds.

My first item of advice to someone recently diagnosed with a chronic condition would be to find a community of fellow sufferers. Immediately. However you choose to cope with the news—self-pity, stoicism, defiance—all that can wait until you plug yourself in to a community, which can take many forms (forums, fundraising events, summer camps). There’s no substitute for speaking with people who understand what’s happening to your body and your emotional life. It organizes your experience, allays confusion/fear, and gives you a support network. So that’s my advice: find a community right away.

Having worked as a cartoonist and a factory hand, Forester McClatchey is currently an MFA Candidate in Poetry at the University of Florida.

Amber Blackburn:

Amber Blackburn

If I could give advice to someone who had recently been diagnosed with a chronic condition, I would pass along three thoughts. First, I would express the importance of a good support system. Whether that be from family or an online support group, we all need to have people to talk to who truly understand what we are dealing with.  Secondly, I would pass along that it is perfectly okay to ask for a second opinion or for a change of doctors. If you don’t feel that you are getting the care you need then by all means please ask for another option! Our health is of the utmost importance therefore we deserve only the best care. Lastly, I would stress the importance of advocacy. Not just for the condition as a whole but for yourself.  No one will ever hold your care and health to the level that we do for ourselves.

Amber Blackburn is 32 years old and was diagnosed with lupus six years ago. She has been blogging and acting as an advocate for a year and a half. She can be found on Twitter at @LupieWarrior511.

Eric N. Valor:

Erin N. Valor

I would say two words: “be prepared.” For Person(s) with ALS (PALS) such as I am, it’s crucial you stay ahead of the disease by making required adjustments to your home, obtaining necessary equipment (crutches, powered wheelchairs, a wheelchair-accessible van, etc.), and other preparations BEFORE you need them. With an average survival of 2-5 years, PALS don’t have time to wait. Unlike Mick Jagger, time is not on our side.

Eric N. Valor is an IT professional turned self-taught neurology researcher focused on ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s Disease). He can be found on Twitter at @surfiving.

Rhiann Johns:

Rhiann Johns

There are so many things that I wish someone would have told me after being diagnosed with a neurological condition; or even during the many years when searching for an explanation to the symptoms I was experiencing. In my experience, even after gaining a diagnosis, and particularly one which is not well known I still felt incredibly alone and isolated.  So, I would advise others to seek support, whether this involves a face-to-face support group or even by finding others with the same condition online. Find your tribe, and I promise you, you will never feel alone again.

But, even when you’ve found your tribe, remember that not everyone’s experience with a neurological condition is going to be the same. These conditions are complex, and no two people experience the same set of symptoms.  So don’t compare your experiences with others in your situation – it will only drive you crazy and often will make you terrified of what your future may entail.  And don’t let other people draw comparisons for you, as they almost always have bad endings or suggest unproven treatments to try!  Work out a treatment plan that works for you, and your symptoms with your healthcare team. There will be dark days, and so I suggest to develop a sense of humour, even a dark humour – you have a fall in the street?  So, what?  Laugh it off, get back up and carry on!  Laughter helps you get through the day, especially those not too good days and makes the uncertainty a little bit more bearable.

After being diagnosed, there are certainly many more hospital appointments in the future.  So, when visiting your neurologist or other healthcare professional involved with your care, prepare!  Write a series of questions you have or concerns that have cropped since you last saw them in advance.  Also, keeping a personal health journal is something I would recommend, so you don’t forget to mention certain symptoms or other issues that you’ve encountered.  As don’t forget, you are the best reporter of your symptoms and your experience with this condition!

Rhiann is a Psychology graduate who was only recently diagnosed with Functional Neurological Disorder (with a host of other issues!) and who shares her experiences with living with a neurological condition at My Brain Lesion and Me. She can be reached at Twitter at @serenebutterfly.  

Amy Nicewicz

Amy Nicewicz:

If you are newly diagnosed with a chronic condition I want you to know how important it is to establish a support network. When you are having a rough day you should not need to be afraid to reach out. Fighting alone will not work. You need a stable team by your side to help you get back up when you want to give up. You have to be your own advocate sometimes. Let others know what you need in order to succeed. Communication is the key. Not everyone understands what you are going through. It can be beneficial to talk to others battling the same condition. This helps you realize you are not alone and can provide another perspective. Try your best not to let your condition stop you from doing what you love. Let your illness empower you. Fight back!

Amy is a sophomore in college studying Wellness and Alternative Medicine. She loves animals, music, and the outdoors. She can be found on Twitter at @SmileFighter1. 

Do you have thoughts on this issue? Follow us on Twitter @FolksStories and tweet us to add to the conversation.

Send Me More Stories About Chronic Illness

Thank you! We will notify you when there are new stories about this topic.