898 posts in the category “Openness”

Living with a mental health condition? See these helpful pointers for your next job interview

Posted March 19th, 2018 by

Unsure of how to navigate that job interview? You’re not alone. Members have exchanged their experiences and strategies here on PatientsLikeMe — from worrying about how to control nervous twitches to advice about not oversharing. Read on for more info about what you need to disclose to your potential employer, and hear how other members get through their interview jitters.

To disclose or not disclose? Sharing your mental health condition

“I’m damned if I’m open about it, and I’m damned if I try to hide it,” writes a person living with schizo-affective disorder in this Fast Company article. Weighing whether to disclose your condition and risk not getting the job against the stress of hiding a condition while performing a job isn’t easy. But Art Markman, PhD, professor of psychology and marketing at the University of Texas at Austin, offers some guidance:

While you don’t have to disclose your mental health condition during the interview, Markman recommends that you should at some point set up supports at work for success. To get protection under the Americans with Disabilities Act (ADA), you must tell your employer about your condition to get accommodations before there are any issues. This also enables your employer to structure your job in a way that might reduce stress.

Remember to breathe

Shana Burns, contributor to The Mighty advises dealing with anxiety you might have ahead of an interview by focusing on your breath:

“In through the nose, out through the mouth, count to 10 and slow everything right down. You are tingling because you are breathing too quickly, slow it down, and it will stop. This is a temporary feeling. It will not last forever.”

Burns adds, “Remember that you are OK; distract yourself — however you need to distract yourself, do it, and be kind to yourself.”

4 interview tips from PatientsLikeMe members

1. Overdressing is OK, but try not to overshare

“I have a Doctorate degree in Education. …I tend to want to overshare thinking it will make the interviewer realize that I know a lot about the subject or position. Oversharing things about myself frustrates my friends and family but at least they understand why…. I’m just trying to connect, but it is so out of [whack].”

“I have visible tattoos and piercings. I’m willing to remove a piercing while working if I have to. My tattoos are on my wrists…I plan on wearing long sleeves to the interview.”

2. Gaps in your resume? Practice what you want to say about your work history ahead of time

“I guess it’s a fine line between saying too much and just coming off as smart and enthusiastic…I always have too little to say. In my interview on Monday, the first thing they asked was ‘why aren’t you working up to your education?’ That, and gaps of time off due to illness, make a decent resume look suspicious to employers. I stammered something about ‘illness’ but should have been more prepared. Role playing is a good idea, at least for those painful questions. And I just have to keep doing it (ugh)…”

  • Tip: Speaking of preparing for tough questions, The Muse provides some common interview questions and coaching to how to answer them.

3. Show your interest in the company and the job

“Eye contact is very important. Smile. Sell your good points, you have many.”

“Learn a little bit about the company before going into the job interview (“I learned a little bit about the company going into the job. For example, I worked at Victoria’s Secret. So I learned what my favorite part about the company was. You can be a little cheesy and say things like ‘I love that _______ store remembers its audience. It’s a strong quality of this store to have sizes and styles for every shape.'”)

4. Come with questions (even simple ones)

“Have a question or two prepared for when they ask ‘So do have any questions for me?’ That shows that you are truly interested. They can be simple like what is the dress code or roughly how many hours will you work a week.”

What has your job interview experience been like? Do you have any helpful tips to share? Log in or join PatientsLikeMe and jump in the conversation.

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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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