4 posts tagged “openness about diagnosis”

Pre-diagnosis limbo: “I knew something was wrong”

Posted March 16th, 2018 by

Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or years before getting diagnosed.

Let’s take a look at the diagnosis “lag time” and some common first symptoms for various conditions, plus anecdotes and quotes about members’ earliest experiences with their condition (like this one from a member living with multiple sclerosis).

Diagnosis delay

The graph below shows how long it can take for people with various health conditions to receive their diagnosis. While it doesn’t represent every patient’s experience, it gives a sense of the hundreds — or in some cases, thousands — of days many people live with their symptom(s) before they get their diagnosis. (Click here for a larger view.)

* Median time between “first symptom” date and diagnosis date for members who’ve reported both on PatientsLikeMe, including (N=) 5,671 members with ALS; 12,870 with bipolar disorder; 40,846 with fibromyalgia; 430 with lung cancer; 7,918 with lupus (SLE); 14,929 with major depressive disorder; 30,262 with MS; 8,214 with Parkinson’s disease; 9,100 with PTSD; 6,979 with rheumatoid arthritis

Disruptive, elusive symptoms

“I knew something was wrong, just did not know what,” says one member with living with multiple sclerosis (MS) — a sentiment repeated in many forums.

What was your first symptom or hint that you had a health issue? When we ask members with certain conditions to recall their “first symptom noticed,” here’s a look at the three most commonly reported responses:

  • ALS – Slurred speech, foot drop, muscle twitching
  • Parkinson’s disease – Tremor in hands, tremor (unspecified), balance problems
  • MS – Fatigue, balance problems, numbness and tingling with pins and needles
  • Lupus (SLE) – Fatigue, muscle and joint pain, joint pain
  • Rheumatoid arthritis – Joint pain, muscle and joint pain, joint swelling
  • Fibromyalgia – Muscle and joint pain, fatigue, pain (unspecified)

Many health conditions have at least some similar or overlapping symptoms, which can confuse both doctors and patients. “It’s so weird because so many things feel like they may be something else,” one member noted in a forum discussion.

Members living with mental health conditions report a variety of symptoms. Looking at the graph above, many with mental health conditions appear to live with symptoms for three to five years or more before their diagnosis. Stigma surrounding mental health diagnosis and treatment could add to this delay and is a common topic discussed in the forums and in the medical community. Here’s just one comment from a member living with bipolar I disorder.

Years of “limbo”

Some conditions don’t have a standard diagnostic test or tool yet. Months or years without a proper diagnosis can be “hellish,” writes one member in the Parkinson’s disease forum, which launched a discussion that went something like this (can you relate?):

“My Doctors … and there were many …. misdiagnosed me for 10 lovely years! A hellish period…”

“It took 4 yrs in my case. The problem is no one seems to look at the person as a whole. The doctor’s are all specialists dividing the body into specialized ‘chunks.’ It’s hard to connect the dots this way…”

“It took over a year to be diagnosed. Then my family dr would not believe the diagnosis by the specialist and kept telling me that all the symptoms were all in my head and prescribing all the wrong stuff…”

“It took around 16 years to get diagnosed. Years of compiling a list of illnesses so long that even I started to think I was a hypochondriac…”

Many other communities have discussed their first symptoms and paths to diagnosis, including members with ALS, lupus, MS, and epilepsy.

How long was it before doctors correctly diagnosed your condition? Join PatientsLikeMe to connect with thousands of others who can relate.

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Why these 5 Olympians with health conditions are #1 in our hearts

Posted February 28th, 2018 by

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden.

U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes of vomiting and severe weight loss and has been hard to diagnose. She had three abdominal surgeries and has shown her scars on Instagram.

After a long and painful recovery, Alexa was able to return to skating. “My whole outlook changed,” she told Team USA. “I was grateful to have the chance to fall instead of stressing out over falling or not. Was a fall as big of a deal as a drain getting pulled out of me? No, not at all. I was grateful.”

In PyeongChang, Alexa and her husband/skating partner, Chris Knierim, took home the bronze medal in the figure skating team competition and placed 15th in the pairs competition.

Alexa shared this photo with SELF for a video about her health problems and extraordinary road to the Olympics.

American long-track speed skater Brittany Bowe sustained a concussion when she collided with another skater in 2016. Later, after fainting multiple times, she was diagnosed with post-concussion syndrome and a lesser-known condition called “POTS” or postural orthostatic tachycardia syndrome. POTS can be a years-long or potentially lifelong condition, and it affects the body’s ability to control blood pressure or heart rate as it should when you stand up, which can cause dizziness, lightheadedness or fainting.

“There would be times where people I’d not seen in a while [would say], ‘Oh you look great, you look so healthy…’ And I’m just dying inside because I know my head isn’t on my shoulders where it normally sits,” Brittany said in a video she shared on Instagram. (Her comments reminds us of what many patients with invisible illness hear from “the normals”: “But you look so good!”). She received specialized care and coaching for people with POTS and was able to qualify for the 2018 Olympics.

Canadian snowboarder Spencer O’Brien started feeling serious joint pain and stiffness in late 2012, and she originally attributed it to normal wear and tear from her sport. It took until 2014 to get the right diagnosis (rheumatoid arthritis) — and she went through bouts of depression before finding out what was wrong.

“A big lesson I learned during that experience was to be an advocate for my health,” Spencer told The Inertia. “I think our intuition is so strong, like I knew something was wrong with me beyond the injuries, and I did voice that, but we ran a number of tests, which came back clean.” She had to push for additional tests, which pointed to RA and helped her get on the right track with her treatments so she could continue her sport.

U.S. cross-country skier Kris Freeman was diagnosed with type 1 diabetes in 2000 (at age 19) after a routine blood test run by a U.S. ski team physiologist. PyeongChang was his fourth Olympics appearance. During the 2006 Olympic Games, The New York Timesprofiled Freeman and his unique treatment/training regimen. (Little known fact: Insulin is on the anti-doping list, and athletes who need it for medical treatment, like Kris, have to apply for a waiver — “one more hurdle that comes with managing diabetes,” The Times noted.)

“The last few years have been tough with some pretty public setbacks with my diabetes,” Kris told Lilly Diabetes (he’s a speaker at their diabetes summer camps for kids). “But, I’ve been able to stay positive and maintain my nutrition and overall diabetes management, which has helped me tremendously. I want to show everyone, especially children, that they can and should keep reaching for their dreams.”

Marc Oliveras, an alpine skier from Andorra, was diagnosed with lupus (SLE) in 2014 and took a break from his sport so he could treat the autoimmune disorder, which was affecting his skin, kidneys and blood. “After a long recovery and a difficult summer, where I had to start first knowing the unknown [my disease], being able to compete is already a reward,” he said in his athlete profile.

It’s worth reading The Mighty’s article to the end, because the author reminds people living with health conditions that everyone’s illness and situation is different: some people may have milder forms of a disease, respond better to treatment, or have better access to world-class care.

Also, the media tend to share a boiled-down or glossed-over features on athletes triumphantly “overcoming” their condition, rather than showing the everyday challenges or realities of managing their condition while training for their sport. Fortunately, athletes like the ones above are raising awareness: they’ve lived, breathed and trained with their condition, and they feel grateful to even be able to compete. That kind of perspective is pure gold.

Do any of these quotes or stories strike a chord or inspire you? Join the conversation on PatientsLikeMe.

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