3 Things Not to Say to Someone with a Chronic Illness

1. “Why don’t you just try exercising more and eating healthier?”

This is one of the most common questions I get asked when I first tell a friend that I have a chronic illness. And while it may be a well-intentioned question, the reality is, autoimmune conditions do not yet have a cure, and eating well and exercising is unlikely to make one’s symptoms dissipate.

While some patients may swear by a certain diet, such as going gluten-free, or adopting a particular exercise regimen, many others do not see a noticeable difference in their symptoms, despite extensive lifestyle changes. Also, such a sentiment often puts an unnecessary burden on the patient, who may feel like they ‘deserve’ their disease for not adopting ‘enough’ of a healthy lifestyle, when in fact, many scientists believe that there is a strong genetic component to autoimmune and other inflammatory conditions, which is beyond the patient’s control.

So please, the next time you think to tell someone to eat more kale to cure their painful rheumatoid arthritis- think again.

2. “Are you sure that’s what you really have? Maybe it’s just depression?”

When someone confides in you that they have a chronic health condition, they want to feel supported. The last thing they want is a friend or family member putting doubt into their mind about their health.

Furthermore, many patients go years from doctor to doctor seeking an answer about their health problems. When they finally get a diagnosis- although shocking and often devastating- there is a certain amount of relief that one experiences in at least knowing ‘what you have’ and the reassurance that what you’re going through is real. Asking someone “if they’re sure” about their condition, is essentially invalidating their health issues, right when that individual has finally found some closure.

Finally, asking if “it’s just depression” is simply unacceptable. Studies have shown that people with autoimmune conditions have a higher incidence of mental health problems such as depression. However, this shouldn’t be brushed off as “just” depression. Moreover, when I personally have been asked this question in the past, it made me think, ‘is this person saying it’s all in my head?’ This, in turn, made me more reticent about sharing health-related news in the future.

3. “It can’t be that bad, can it? You’re just exaggerating!”

For someone else to brush off your disease is the ultimate slap in the face. Many people with chronic health problems have an invisible illness, meaning that on the outside, they may look fine, but on the inside, they are suffering. Symptoms like chronic pain, organ and tissue damage, and fatigue are not usually noticeable to the naked eye.

Even health care professionals often don’t empathize with their patients’ complaints, telling them that they are exaggerating, or accusing them of being a hypochondriac. The result is that the patient may internalize their suffering, and not turn to their physician or loved ones for the medical help and support they need.

Unless you yourself have experienced the relentlessness of having a chronic condition, you can never know what someone with an invisible illness is going through. All you can do is listen and be there for them.

 

Did you like these tips on what NOT to say to someone with a chronic illness? If so, please like, share, and comment below!

When your doctor doesn’t believe you

Have you ever complained to your family physician about your symptoms, only to be totally dismissed?

Whether you’ve been diagnosed with an autoimmune disease or not, your ailments may be ignored or written off as ‘not a big deal’ by a health care professional.

This has often happened to me over the course of the last 7+ years of having an autoimmune condition. For example, before I was even diagnosed with Sjögren’s Syndrome, I was told that my symptoms, including joint pain, eye and mouth dryness, recurrent ulcers, yeast infections, and fatigue had a plausible, non-disease related cause, and weren’t really a ‘big deal’ anyway.

Even worse, other health care professionals told me my symptoms were nothing more than a figment of my imagination.

Worse yet, after many unproductive visits to doctors’ offices and labs, with little to no explanation for what could be wrong, I actually started to believe…could I be imagining this?

One family MD, for example, told me my joint pain was probably a result of ‘texting too much’. As a fresh-faced teenager, I probably didn’t look like someone who could be experiencing debilitating joint pain. But that shouldn’t matter. In fact, juvenile rheumatoid arthritis, affecting those 16 years and younger, affects over 50,000 people in the United States alone.

Another time, I needed a referral to see a rheumatologist. The nurse who checked me in asked, “How does someone your age need a rheumatologist? Did you wear high heels too much in high school?” Not only was her questioning intrusive, rude, and uncalled for, it invalidated my experience as a patient with a chronic health condition.

As a result, I became even more reticent to explain my health issues with the people who I should be speaking with the most…health care professionals! And sadly, this is too often the experience for others living with autoimmune or other chronic health conditions.

The Sjgoren’s Syndrome Foundation recently shared a tip on social media, stating, “Remember that just because a symptom can’t be seen easily, it is still important. If you feel that a physician dismisses your Sjögren’s symptoms, help educate them and/or find another physician”. Many commenters responded by lamenting their own experiences with not being taken seriously by their healthcare providers. One woman commented, “My dentist keeps telling me to stop making excuses for my bad teeth”, referring to the fact that Sjögren’s often has a devastating impact on patients’ teeth, despite maintaining a solid oral hygiene routine.

If I had to give one piece of advice for anyone with chronic health problems, diagnosed or not, I would say to never give up. If your physician doesn’t take you seriously, move on. This doesn’t mean that you don’t listen to your doctor’s medical advice; this means that if they tell you it’s ‘all in your head’, or ‘it can’t be that bad, can it?’, and you know they are wrong, then you stand your ground.

Remember, you are the best advocate for your own health! Check out these helpful tips published by WebMD about talking to your doctor.

Top News in Autoimmunity – Week of Feb. 20, 2019

Lupus Strongly Linked to Imbalances in Gut Microbiome

Scientists at the NYU School of Medicine have discovered that systemic lupus erythematosus (SLE) is strongly linked to imbalances in the body’s gut microbiome.

The study showed that 61 women diagnosed with lupus had five times more Ruminococcus gnavus gut bacteria compared to 17 women who were healthy and did not have lupus. The study also showed that the abnormal levels of gut bacteria appeared to positively correlate with lupus ‘flares’, which are instances when lupus symptoms, such as joint pain, skin rashes, and kidney dysfuntion, increase dramatically.

Dr. Gregg Silverman, immunologist and one of the lead researchers in the study, commented, “Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares.”

Dr. Silverman also stated that the study may give way to new treatments for the disease, such as probiotics, fecal transplants, or dietary regimens that prevent the growth of the Ruminococcus gnavus gut bacteria. The study also discusses the role of ‘leaky gut’ in triggering the body’s autoimmune reaction.

To read more about the study, click here.

Immunology ‘Boot Camp’ Emphasizes the Role of Chronic Stress in Autoimmune Disease

Leonard Calabrese, Vice Chairman of rheumatic and immunologic disease at the Cleveland Clinic, emphasized the role of chronic stress in the development of autoimmune diseases during an immunology ‘boot camp’.

During his speech, Calabrese cited data that chronic stress compromised the body’s surveillance of pathogens. As a result, modern stressors, such as PTSD, major depression, and the stress associated with being a caregiver, which are chronic in nature, may trigger the pathogenesis of autoimmune disease. This is in contrast to acute stress, which comes in response to immediate dangers, ‘like our ancestors encountering a saber-toothed tiger’, states Calabrese.

The link between chronic stress and autoimmunity has given way to the development a several new therapies. For example, parasympathetic and vagal nerve stimulation are now in development to treat pain-related and autoimmune conditions, such as Rheumatoid Arthritis (RA) and fibromyalgia.

To read more about this research, click here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 13, 2019

Benefit Event Organized for New York Woman with Scleroderma

A benefit event has been organized by the friends of Krislyn Manwaring, a 25-year old woman with Scleroderma living in Erin, NY.

Scleroderma is an autoimmune condition that causes the body’s soft tissue to harden. Manwaring, who is now on oxygen, is in need of a stem cell transplant. However, her health insurance won’t pay for it.

The benefit event will raise funds to go towards Manwaring’s transplant procedure. According to the event’s Facebook page, over 200 attendees have already RSVP’d for the event.

Young Woman Shares Journey with Autoimmune Encephalitis

Tori Calaunan, a young woman from Las Vegas, shares her journey with anti-NMDA receptor encephalitis with the Autoimmune Encephalitis Alliance.

While in nursing school, Calaunan felt some weakness in her right leg, but brushed it off as nothing serious. As the weakness continued to worsen, she also experienced confusion and dizziness. She passed a neuro test and MRI, however, and doctors told her that everything was fine.

She eventually checked into the ER, and stayed there for a month before transferring to a hospital in California, where she finally received her diagnosis of Autoimmune Encephalitis.

Family of Young Man with Rare Autoimmune Disease Outraged Over Drug Price Hike

Will Schuller, from Overland Park, Kansas, was 18 when he began experiencing extreme weakness. An avid runner, he was pulled out of high school when he struggled to walk down the hall, and stopped being able to go up the stairs.

He was eventually diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a chronic autoimmune disorder than affects muscle strength. LEMS is reported among 3,000 people in the US, and can dramatically impact one’s quality of life.

Schuller was prescribed a drug called 3,4-DAP, which made him feel better instantly. The drug was free as a result of an FDA program called ‘compassionate use’. The drug’s manufacturing rights, however, were sold to a company called Catalyst, which renamed the drug Firdapse, and raised the price to $375,000/year for the medication.

Schuller’s family decried the extreme price hike, stating that if it hadn’t been for this medication, their son would certainly be in a wheelchair. Senator Bernie Sanders of Vermont called the price increase a ‘fleecing of American taxpayers’.

Schuller is now a senior studying mechanical engineering at the University of Tulsa. Read more about his story here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 6, 2019

Early Onset Primary Sjögren’s Syndrome May Carry a Worse Prognosis

French researchers have discovered that patients diagnosed with early onset Primary Sjögren’s Syndrome may carry a worse prognosis over the course of the disease. Early onset is defined as a diagnosis before age 35.

The study, reported in Rheumatology, states that early onset of this autoimmune disease was found to be associated with a higher frequency of:

  • Salivary gland enlargement
  • Lymph node enlargement
  • Bleeding underneath the skin
  • Liver involvement
  • ANA (antinuclear antibodies, especially anti-SSA and anti-SSB antibodies)
  • Positive Rheumatoid Factor levels
  • Low C3 and C4 complement protein levels
  • Increased levels of immunoglobulin antibodies in the bloodstream

Furthermore, researchers also acknowledged that those with an early onset of the disease showed a worsening progression in their symptoms, whereas those with a later onset showed significant improvement.

Read more about this ground-breaking study here.

’90 Day Fiancé’ Star Ashley Marston to Undergo Additional Surgery Following Kidney Failure

Ashley Marston, star on TLC’s hit reality TV series ’90 Day Fiancé’, recently revealed that she is undergoing additional surgery following a health scare.

Although she did not reveal the nature of her impending surgical procedure, Marston did reveal that she has an autoimmune condition called lupus. Lupus is a disease in which the body’s own immune system attacks its vital organs. In Marston’s case, she suffers from lupus nephritis, which causes inflammation in the kidneys.

After being found unresponsive in her home last month, she was rushed to the hospital and treated for kidney failure. Her upcoming surgery is speculated to be related to this recent hospitalization.

Fans are wishing Marston the best with her surgery and recovery. Read more about her shocking story here.

Interested in more #autoimmunewarrior news? Visit my last news post, here!

Working with a chronic illness

Working with a chronic health condition can be a challenge. Sometimes, you may not feel ‘up to’ working, but you still have to put in a full day on the job. There are times when you feel sick— but perhaps not sick enough to warrant taking a sick day. Even if you do take time off, there may be judgments from co-workers that don’t believe that what you’re going through is real, especially invisible illness symptoms, such as pain.

When looking back through my life, I can see various ways in which my chronic illness, Sjögren’s Syndrome, has impacted my work. For example, I experience significant joint pain after doing hours’ worth of typing. Also, the stale office air worsens my dry eye and mouth symptoms, causing me to use copious amounts of eye drops and saliva-stimulating medications. Also, debilitating fatigue affects my energy levels and impacts my ability to produce as much as I want to.

As a result, I have had to adjust my lifestyle in order to stay healthy and maintain my productivity while on the job. Here are a few tips that have helped me:

  • Getting a good night’s rest – Before being diagnosed with Sjögren’s, I could get 4-5 hours of sleep per night, and still be productive and alert throughout the day. But no more. I must get at least 7-8 hours’ worth of solid rest to help combat against disease-related fatigue.
  • Being mindful of my eating habits – With a chronic health condition, I need to be extra mindful of what I’m putting into my body. While others may be able to sustain themselves on caffeine and sweets- I know that doing likewise isn’t going to make my body feel any better; so I pack a healthy lunch, and choose the healthy option when I eat out.
  • Organizing my treatment plan – I think it’s extremely important to be organized when you have a chronic illness. For example, I record my doctor’s appointments on my calendar and stay on top of taking my medications and supplements, which it vital to treating my symptoms.
  • Staying active – Exercising, while also holding down a job and managing my chronic illness, can be a challenge. However, I know it’s important to stay active, because it makes my body stronger and more resilient, and I’m able to complete tasks using less energy as a result. So, I go to the gym and take walks around my neighborhood and in the business park on my lunch break at least a few times a week.

When you have to leave your job

I recently started following a YouTuber by the name of Samantha Wayne. In her YouTube channel, called Live, Hope, Lupus, she discusses having to leave her full-time job as a result of her autoimmune condition. You can check out the video here.

Having to leave a job due to health reasons can be devastating. In addition to the financial benefit of having a job, many individuals (especially Americans) rely on their job to pay at least partially for their costly health insurance premiums. I have found that there is also a psychological benefit to having a job; it gives me confidence, makes me feel like I am ‘valuable’ and helping others, and feel like I am a productive member of society. Although one shouldn’t rely solely on a job for their self-esteem, I do believe that it’s a contributing factor.

In Samantha’s case, she transitioned to several part-time business and work opportunities in order to earn a living, and have more time and flexibility to manage her lupus and Sjögren’s symptoms. Exploring other work alternatives, such as freelancing, part-time and contract work, or starting your own business, might be an ideal way to balance both your health and financial commitments.

Final Thoughts

If you are finding it challenging to keep up with managing both your chronic health condition, work and other life demands, I would encourage you to implement the tips above to see if it makes a positive difference. Don’t let your disease get in the way of accomplishing your dreams and goals!

How do you manage your chronic illness while working? Has your health impacted your ability to do your job? Do you have any additional health management tips? Comment below!

 

Happy New Year’s! What are your 2019 Resolutions?

Happy New Year’s Day!

Firstly, happy New Year’s Day and thank you to those of you who already follow the Autoimmune Warrior blog! I am so looking forward to 2019 and all of the adventures and experiences that are to come.

New Year’s Resolutions

What are your resolutions for 2019? One of my main resolutions is to focus more on my health and well being. For example, I’d like to go to the gym more, work out with my husband, and attend more fitness classes. I also want to cook more meals at home, and learn new healthy recipes.

Finally, I want to spend more time taking care of my autoimmune conditions- especially Sjögren’s Syndrome, which is the main condition that affects me. This involves attending doctor’s appointments, taking all of my required medications, and listening more to my body- even if it sometimes means saying ‘no’ to things that I want to do, but would over-exert myself.

Here’s to 2019!

So here’s to the year ahead – wishing all of you readers success in your endeavors this year.

What are your goals and aspirations for 2019? I would love to hear them. Comment below!