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.

 

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Edmonton fighter diagnosed with rare disease; Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

NMO

Edmonton fighter diagnosed with rare disease

Victor Valimaki, a 37-year old professional fighter from Edmonton, Alberta, Canada, was left crippled by a rare autoimmune disorder.

Although Valimaki has fought in over two dozen professional fights, leading him to a successful career as an Ultimate Fighting Championship (UFC) mixed-martial arts fighter, he was recently diagnosed with neuromyelitis optica (NMO), otherwise known as Devic’s disease.

This autoimmune condition affects the body’s optic nerves, spinal cord and brain. For Valimaki, the disease caused him to lose his vision, speech, and ability to walk. Although he has since regained his sight, he is still struggling with the other consequences of the disorder.

Read his full story and watch the video on CTV News Edmonton.

Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

An Italian biotechnology company named Altheia raised over 17 million euros this week to fund gene therapies that could potentially treat many incurable autoimmune diseases.

The company’s technology, which uses gene therapy to engineer bone marrow stem cells to express a molecule called PD-L1 that inactivates the immune system’s T cells. In other words, the molecule released will ‘hit the breaks’ on the body’s immune system, avoiding an immune system attack on healthy tissue.

Paolo Rizzardi, the company’s CEO, has stated that he expects clinical trials for autoimmune conditions such as multiple sclerosis and type 1 diabetes to begin in 2021.

Read more about this exciting new development on LABIOTECH.eu.