Most people haven’t even heard of the term invisible illness, let alone the set of unique diseases that fall under its umbrella. But for those of us living with an invisible illness, it would be impossible to forget. 

Invisible illness is a term used to describe any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others — but also mental illnesses. Today I will focus on how physical invisible illnesses can affect the body, the mind, and relationships.

Living With Chronic Pain

It can be challenging and frustrating to live with an invisible illness. Especially when the part of your body that’s being affected isn’t somewhere you would comfortably talk about with people you don’t know very well. Those living with an invisible illness that is also a chronic pain condition will experience an added layer of frustration.

Appearing to be okay to the outside world when you feel constant pain makes it tough for those around you to understand the hardship you are facing. Most chronic pain patients develop a pretty strong pain tolerance, in both the body and the mind. Part of this pain tolerance prevents us from sharing how the pain might be affecting us. The mental tolerance we build to the pain creates a mindset that we should keep it to ourselves, almost as if we can prevent the pain if we refrain from talking about it. 

It took me a long time to realize that I had adopted this mindset. With chronic pain, it’s very hard to convince yourself that you deserve to complain every once and awhile.

Interstitial Cystitis

My invisible illness is called Interstitial Cystitis (IC), or painful bladder syndrome. It is an infection in the lining of the bladder that leads to chronic inflammation and frequent urination. It feels very similar to a urinary tract infection (UTI), a common infection contracted mostly in women who experience pelvic and bladder pressure or pain, burning with urination, a constant urgency to pee without relief, and sometimes blood in the urine. Over time, the infection scars the bladder, which affects its capacity.

Unlike a UTI, this chronic bladder condition does not respond to antibiotics and there is no medication available to relieve the symptoms it causes. The last FDA-approved medication for IC was released in 1995, called Elmiron. Most IC patients don’t use it due to the unpleasant side effects and its lack of efficacy.

Fortunately, by sending your body into remission you can prevent the scarring of the bladder and ultimately can save the future of your urination habits. 

Diet Is The Cure

For a long time, doctors who diagnosed patients with IC would tell them that there is no cure and that the recommended diet would likely provide little relief. They would prescribe the patient with Elmiron or recommend bladder distillations, another form of treatment that has been proven to be ineffective by most patients. Today, there are dozens of doctors who have been diagnosed with IC who report achieving full remission by changing their diet alone. 

The diet is not ideal and it limits me from eating most of my favorite meals. In fact, it’s been easier to block out the pain or ignore it for the most part than to adopt the eating habits that will make me feel better. I think in part it has given me hope to know that if I follow a strict diet, I will feel relief. I’m not sure how I will feel if when I do fully commit to the diet someday and the relief I’m expected is not there.

Primary Biliary Cholangitis

The other invisible illness I will touch on today is called Primary Biliary Cholangitis (PBC) or Cirrhosis. PBC is a progressive autoimmune disease that results in the destruction of the bile ducts of the liver called the intrahepatic bile ducts.

When my cousin was diagnosed with PBC, it really put my invisible illness into perspective. She understood exactly what I was going through in terms of not physically being able to show friends or family where her pain was coming from. She too had a condition with no cure, but worse yet, the final phase of her disease led to liver failure. 

Not only did this put my pain into perspective, but it made me reconsider my outcome. At least, regardless of how seriously I take IC treatment, the end game wasn’t major organ failure. 

Early Signs and Symptoms of PBC

Unfortunately, there aren’t many early signs or symptoms of PBC, so most patients aren’t diagnosed until several years after they begin battling the condition. One of the most common early indicators is itching, medically called pruritus, and most patients report feeling fatigued, dry eyes, and dry mouth. 

Other symptoms of PBC include:

  • Pain in the upper right abdomen
  • Swelling of the spleen
  • Bone, muscle or joint (musculoskeletal) pain
  • Swollen feet and ankles (edema)
  • Buildup of fluid in the abdomen due to liver failure (ascites)
  • Fatty deposits (xanthomas) on the skin around the eyes, eyelids or in the creases of the palms, soles, elbows or knees
  • Yellowing of the skin and eyes (jaundice)
  • Darkening of the skin that’s not related to sun exposure (hyperpigmentation)
  • Weak and brittle bones (osteoporosis), which can lead to fractures
  • High cholesterol
  • Diarrhea, which may include greasy stools (steatorrhea)
  • An underactive thyroid (hypothyroidism)
  • Weight loss

Most of these symptoms aren’t noticeably present to the patient for several years, which makes the condition a challenge for doctors to diagnose early.

Treatment Options

The only FDA-approved treatment for first-line therapy of PBC is ursodeoxycholic acid (UDCA or Ursodiol). Approximately 40 percent of patients don’t respond to this therapy and 5 perfect have uncomfortable or dangerous side effects that force them to stop treatment. 

The only treatment that is FDA-approved for second-line therapy of PBC is obeticholic acid (Ocaliva). Roughly half of the patients who try Ocaliva don’t respond to treatment and some experience a worsening of itching, a common symptom of PBC.

PBC and IC are both invisible illnesses, but another common thread they share is a lack of medical research. Ancient treatment plans and outdated medication options are two of the more frustrating parts of living with these conditions.

Hope Through Clinical Trials

What can we do to enhance the quality of healthcare for these patients and advance medical knowledge revolving these conditions? The only answer that gives us hope is clinical trial research. There are several clinical trials that are currently researching IC or PBC but some are more promising than others.

For IC, the research is more abundant and includes several different types of experimental treatment. Some of which are oral and topical medications, physical therapy, diet modifications, and more. A full list of clinical trials for IC that are currently accepting new patients can be found here.
Seladelpar is the only potent and selective PPARδ agonist in development for inflammatory liver diseases like PBC. This drug is being tested under the Enhance study, a clinical trial conducted by CymaBay Therapeutics. There are several other clinical studies underway to help PBC patients that test the efficacy of different medications and the severity of symptoms.

It’s funny how quickly we take our health for granted. Even today, I do notice my better days but they aren’t nearly as noticeable as my bad days. It can be frustrating to live with chronic bladder pain because it feels like I am always whining about it. And although my friends and family may become numb to this constant complaining, I do not become numb to the pain. 

Initially, it was challenging to talk about my sickness openly. In part, because it affects an organ that our society doesn’t regularly discuss. Urination habits, my bladder lining, pelvic floor muscles, diet modification, and chronic pain aren’t attractive topics to bring up — and they probably will never be. For IC patients, it can be hard to realize that just because a topic isn’t discussed regularly doesn’t necessarily mean it’s distasteful. In my experience, people have been surprisingly interested in my condition and don’t find it as unattractive or gross as I imagine them to.

I’ve also come to find that writing about my experience with IC online has not only been a therapeutic outlet for me, but it helps others with my condition too. Online forums, discussion boards, and social media groups give those of us who are suffering a safe place to come together and find common ground. 

Understanding invisible illnesses and how to explain them to others can be a complicated matter. Learn more about how to approach a family member or friend who has been diagnosed with an invisible illness or chronic pain condition — in most cases, a strong support system will make a world of difference.